Event ID: 2766727
Event Started: 11/3/2015 8:12:49 AM ET
Please stand by for realtime captions. [Captioner is on music hold.]
[Captioner is on music hold.]
, Until order. --,
Come to order -- I want to thank you for your service, you will be missed unless you don't go. [Laughter]
Carol is having a memorable last meeting. [Laughter]
My understanding is she was doing fieldwork to explore the effectiveness and the efficiency of the delivery system, she thinks it needs more work so. I want to welcome everyone to the meeting, welcome people who are in the participant group back there, or five -- folks watching on the webcast.
The best way to get to the airport, although there are three to choose from in the greater mulcher Posten -- metropolitan area, you can catch a cab, those Ixtapa Eyring -- you can ask at the desk.
-- For folks who are attending in the room, if you would like to make a public comment, 11 AM, or 2:15 PM. Please sign up at the desk so we can manage time. -- A loved that the cafe, it is up skeleton it offers beverages and snacks.
Let's go around the room to introduce ourselves. Starting wherever.
I will mention just on the microphone system, it is pretty simple, you press on, wait till the orange light comes on to speak. It has a magical thing if other microphones are on, it will turn everyone off, there will be a doorbell signed and we will sign over again.
Good morning this is Jamie Zimmerman, --.
Hello I'm Cheryl Arnold.
-- Betty Hermanson, chief medical officer of the advisory group.
J Crossan, chairman of the Medicare advisory commission.
Sherry Davidson vice president of cost and delivery at national group health.
-- [Indiscernible] .
I'm Mary, I am happy jet goes first to show me how to work this.
Paul Sherman, executive Eric at a health plan -- executive at health plan.
Good morning Leon Haley executive [Indiscernible] Good morning [Indiscernible] senior vice president quality of safety.
David Ballard, I am the [Indiscernible] --.
David Atkins research. Cement I am Paul I'm representing [Indiscernible] today.
Paul Ginsburg, University of Southern California I live here, although July meeting I could not make it because I was teaching.
Carol Mojica advocate for the breast-cancer collation.
Victor Montoya Mayo Clinic.
Jean Rexford recently retired, now I just seen -- seem to go to meetings.
[Laughter]
I was looking forward to retirement?
-- [Indiscernible] Portland Oregon.
Charlie Braswell.
Rick, director of [Indiscernible] I think we should have Kevin Graham Botkin Andy Swarts on the phone are you with us?
Okay, maybe we will hear them when they beep in. First order of business. To review and approve minutes from the July 24 meeting the copy of the minutes is in your folders. I'm not sure if there are any comments or changes?
Hearing none. If I can get a motion for approval.
All in favor? Without further do it's my pleasure to introduce Rick who will give us the directors update.
Thank you. Welcome it's great to see all of you. Especially to Carol who gets combat pay for today. We are joined for Alan Murray, Secretary. for finance , Jim will be joining us soon for legislation, we are very happy to have Alan, then three minutes if I can I will spend a couple of minutes on making sure you have a good answer to the question of what has AHRQ do and how do we make a difference?
I think we have a crisp answer to that now. The answer is. We are the leading federal agency devoted to improving safety and quality of healthcare to for all Americans. How do we do that? We do that entryways. We invest in research. And we invest in research to make sure we can make healthcare safer, accessible, how do you do actually do this? That is a very important part of what we do. Second, we invest in creating materials to teach and train professionals and patients health systems. How to catalyze improvements and care. The best research in the world doesn't do anything. If it is not implemented. We have substantial investments in developing materials and implementing. Giving this information really understood and used. Third we generate measures and data to figure out what is going on, to track, you cannot manage what you can't measure is part of the story here. Substantial investments in understanding measuring what is going on is crucial part of this effort.
That is still a pretty high level, we do this the three things, I want to spend time on one example. A very strong example. How those three things come together to lead to improvement and care.
We issued the report almost a year ago, showing hospital care 70% -- 17% safer in 20 in 2010, there were 145 adverse events for every thousand hospitalization, we talk about it here. We were measuring 28 different kinds of adverse events. -- Pressure ulcers, list of 28 things, a list of review of 30,000 records every year. 145 adverse events in 2010 reduced to 121 in 2013. Still way too many. 17% fewer. More importantly that translate into fewer harms to patients over that three-year period. Quite significantly lives saved, $12 million in cost savings.
Questions on why did this happen? There were many reasons. Most fundamentally, the hardware and by thousands of people in the hospitals around the country. Catalyzed by the partner effort that Paul McGann led at CMS. CMS provided technical assistance to hospitals all around the country. Changed payment rules to get the attention of CFOs, and crucially reflecting the work of the agency. In each of these three years I mentioned.
Production of research, we would find more than 10 years ago, it just didn't need to be a cost of business in the ICU, but there were ways to get rid of them. Subsequently we funded a variety of other research, to provide evidence about how to make healthcare safety or. Evidenced by itself does not do anything. Tools and training. Is a second part we developed these to make sure that the evidence is understood and used, work through the comprehensive program, this is a based safety program, around the country to make sure that the evidence was understood and used. It resulted in substantial declines in central line inventions -- infections.
That evidence was spread much more broadly, in the third piece, how would we know about the change from 145 two 121 per thousand? How do we know we would need further efforts? -- from 145 to 121 .
What would we do? We are the leading safety health agency, we do this in three ways research, tools and training, data and measures. This example I think is a very strong example of how we have done this and the effects we have done.
And selection of other work we do generating research, and evidence, here I will love to tell you about each of these in the interest of time we will not. Similarly lots of work in the training tools, and then in measures and data.
I look forward to vetting questions or comments you may have about framing, about this understanding of what we do. Before that I would like to introduce Alan Murray, and Jim a scale, to turn to them for an appropriations process. -- and Jim Ascia, .
It Alan was -- Ellen was on the health and human services a font of knowledge and a great addition to the agency, then Jim, I learned all I know from June and from Ellen Thank you this morning.
[Indiscernible-speaker away from microphone] I work in [Indiscernible] the department [Indiscernible-speaker away from microphone]
One of those is reducing hospital infections. You come to the meetings and you feel good about working at HHS, you see the distinct roles of CMS, and AHRQ, I use this talking to the Senate yesterday, rather than saying there is duplication. We have three great agencies collaborating. The sum is better than the three parts, some of the three parts I think is how you say it.
I know what AHRQ is, I have worked over the three years, and starting some of the funding for that patient effort, we are committed to working with the heel to work with some of these decisions, I was angry with Rick, he used to be here as [Indiscernible], he was so kind and I learned so much I would go to meetings and the was something I didn't understand I would stop and for all of you he was miles away from me, I missed his counsel he was a great teacher and very kind I now forgive you for leaving me. [Laughter] we had a discretionary Morrie and Ryan work for fiscal 2015. We go down in 16 and 17 the biggest goal this year in the process is to get those caps back on.
The Senate and the House wrote bills, this does not go to the president, they read on the local levels, we could talk about those. The non-distress -- defense. The bills were very bad. Both of them did not give us the money to implement the affordable care act, if they gave it to us we could not use it. They were tough on women's health issues. You are aware of all of the discussions on Planned Parenthood. They did not fund AHRQ the House bill, they cut it in the Senate. I believe having worked up there, the Senate cut it because the house did, it is always good if you can blame someone else. They didn't go as far as the house, they felt good, it was clearly in the Senate, they could not have a lot of dollars. We had other problems in the bills, now we have a new deal. Basically through trickery, it brings us back to the 90% level that the president wants to be. This is a good deal. They made cuts to Medicare which was in the president's budget, stole oil from the strategic reserve I don't know too much about that. Nondefense discretionary numbers were backup. The bill was signed by the president yesterday. We expect that Bill gives a big number two appropriations. 50 million more than what they had beginning this process.
Then in geek language there are 12 302B, now they will get together right and Newbill at a higher level based on allocation, this is too hard to bring up one by one to the floor, so hopefully we will have a deal by December. Appropriators told me yesterday they are aiming to finish earlier I don't think they will. They see a constitutional amendment to never be a deadline. [Laughter]
By December 11 we should hopefully have a bill, there are a lot of writers in question, some with the ACA, environmental writers I don't know too much about. They are contentious. We are working hard to see that Newbill. -- New bill and the issues are fixed.
The number one in the list is AHRQ. This is a big priority I met with both the House and the Senator. appropriators yesterday, we have discuss that issue. Rick has been great giving us all of this background information we need etc. All I can tell you is this is a top priority. Appropriators understand both Rick and his colleagues have been good about differentiating, people didn't understand I keep telling the story about our agency priority goals. You really see in many different issues, the role that AHRQ plays and CDC, it is different than an night -- NIH, HHS is better off for it. We have a lot of duplication. I will turn it over to Jim to talk about the budget deal. I it makes sense.
Yes thank you some broad strokes. Since I do not know who is [Indiscernible], these are my views. Probably correct and crazy, these are my views.
[Laughter]
Several things we have a budget deal that is awesome. They provided additional $50 billion in the first year, and then the sick and your quite frankly this is what Democrats want, he wanted a two-year deal Mitch McConnell, that means no appropriations, he did not want that she wanted to manage government to make sure although he may not meet deadlines, he wanted to make sure that we have these and that they took away as many as possible to have some of the system in terms of, will we be able to find the government, go over fiscal deadlines in terms of siblings? -- Feeling? -- The ceiling.
This would be more irresponsible to create a crisis come December, the money is now there, we have 90% of the budget. The presidents administration will continue to push for their budget. This is where the line should be. This is a good budget that HHS put forward. I am still proud of the budget and that is what we will be pushing for. We are not done. We have a budget deal or not it translates into appropriation bills, in the sense that we are giving in the Senate, people would like to go home December 11. We would love for them to go home by December 11, and also confirm some nominees we have out there. Nonetheless, the sooner the better. I would love to meet a deadline, but Ellen is right there seems something is there about doing that.
Big deals are done right clicks again -- right? Again I seen something floating around it made it look like recess was starting in July, two conventions, Olympics, a lot of stuff going on next July. If August does not officially begin, July will feel like a warm-up for you in recess. Folks are not planning to much. Which means a lot of the work should be done June? May? -- Let's make sure that you are at least held [Indiscernible], the excuses gone the money is there.
We will be fighting very hard to make sure you guys are staying in place, mainly because of the narrative that Rick has shared with you, sharing with folks in [Indiscernible]. AHRQ can be tough to explain. I think it matters even more that you have a crisp talking points. This is not PR, it is communication. People need to understand the importance of this operating division. And why it's important to the American people. The broader healthcare delivery system conversation we're having, why it is so important of the public care, and all those things coming out of that. It is front and center. People need to know what the most important things, best advice possible, in terms of how we pursue help in this country. AHRQ is at the forefront of all of that.
Given all of that. Because of the ASL, I have to be optimistic at the same time there is still a way to screw this all up [Laughter], so we have a reconciliation bill that passed the House, for the savvy budget people out there. That is the fast-track way the Congress is able to put together a piece of legislation totally focused on the deficit. It is supposed to be a very neat way of reducing the deficit. Making sure that we cannot filibuster it. Quite frankly the president has no intention of signing. It make sure certain monies do not go to certain organizations. That may engage in research, or portions of that sort of thing, we do not have to say who we are going after. Things like that. -- Sounds like it will take up the week of the 16th, which makes sense anything like that typically you want to make sure that we have a bill that runs up against recess. The following is Thanksgiving recess. It will show up on the Senate floor by Tuesday or so. That will be the business for the entire week.
You will see a lot of votes thereabout planned parenthood, a lot of other things, the question is, does that serve as a pressure valve? Will people be able to get whatever is in their system out of their system? Come December? That's what I do not know whether it is going to be enough. Weather someone will create some kind of crisis in December.
The other issue there, we have another speaker, John Weiner he did -- Bainer, greening -- agreeing and coming to the table.
Still it does not tell me where the powers until who is this in the house who is in charge? I once thought I wanted a PhD in science, if this wasn't so much science it would be interesting -- how to have a legitimate headline, there is no GOP party. If you are part of an organization, a party, you have to agree to the whirls, -- rules. You have to have some way of maybe disciplining people, going by the rules. If you are not then you are a Monty Python socialist common collectible of some sort right clicks -- right clicks?
-- The question is are the folks in charge now do they want to run anything? This is a question I do not have an answer to. For Hill watchers, Paul Ryan had to testify this week, apparently they had a closed rule he pulled for that bill, in an open rule, which means he will open up all types of amendments. Last time I checked 80+ amendments for a bill on the House floor. Imagine what would happen for the appropriations bill come December, what does he come then? What happens to this transparency then? The need for discipline and the need for managing and discipline, right? It will be a very interesting thing to watch. In terms of your priorities, the excuse is was there enough money before? There is money now, we have to push very hard or go and make people realize, it was not even penny wise and pound foolish, it was just foolish. That is the story for the moment. There is still work to be done. We still need to be vigilant, to push very hard about the priorities, AHRQ is definitely the presence of priorities. I will leave it right there.
We have time for any questions for [Indiscernible]?
Monty Python is funny in the GOP.
ILife instead a cry. Is there some mindset?
Some mindset that AHRQ has been lumped with?
No, I think the problem is as Jim said, the lack of dollars, there was pressure to increase NIH, we did not ask for a lot of money for the affordable care act this year. It did not cause a financial problem, user fees go up each year. The Senate bill was clearly reflected lactulose dollars -- lack of dollars or go
-- Lack of dollars.
There is staff in the house whether there was duplication, that is how -- this is what we have been addressing.
What would you say?
[Indiscernible-speaker away from microphone]
The prospects are good, I think I need to say NIH has been helpful to explain the unique role that AHRQ plays. They are very supportive.
I think they will probably do well. Sherry?
Sherry Davidson I represent the business group on health, and healthcare benefits, I've been doing this 27 years. A long time, this is my personal opinion, not my organization. I would actually call down what AHRQ does to saving lives. In healthcare systems, would I do day in and day out, trying to help large employers identify, and get their employees care. 10 years ago I lost my husband suddenly, in part due to the healthcare system. If we do not do the research, do not do the identifying of ways, people will die.
I'm sorry for your loss, I will agree 100%, I was taken, I is spent a lot of time in the hospital with [Indiscernible], he had had some unrelated surgery, they had hoped to discharge him that day, and not keep them in the hospital. I was close to the family so I was able to see the doctor, Bob was not very good, it is probably good that he does not stay in the hospital, you need to be triumphantly to make it through. He suffered infections while at the hospital. What AHRQ does is so important. We have been concentrating on ACA, letting everyone be covered and affordable.
I think what is the most important part is the infectious rate, this is what AHRQ does , a friend in the hospital, this is why I argue for this. Young adult, and children, these are friends of mine and they were so frustrated it was so messed up and no one was talking about it. They are not involved in this world, but what did you find wrong -- Patty Jones passed away from cancer, they said it was not centered, -- patient centered I had never heard that, both that is what they saw. They were pretty capable ladies, they were so frustrated.
So I do think I wish we would try to get the word out about what AHRQ is and how we deliver care, safety and quality. This is just one part of it.
On that point in terms of what is happening in the house, that is a legitimate debate, you may see this is silly, but it is legitimate, people should have that conversation. You have to make a conversation on how to move forward. I heard the argument I have to call a week or -- winner.
-- We need to have that conversation, sometimes Ellen is right, they want to go after the shiny objects. This is all nonsense and providing the care that people need in the continuum, we need to have that conversation we need to be address if this is right in the conversation, we need to be able to get strong and narratives need to backup everything the folks are saying to backup the broader system. Right on the ground to Patty Jo and your husband.
Also there is nothing you haven't shared with me, I saw Oklahoma was in one of those five, can you send me more information?
[Indiscernible-speaker away from microphone]
Good thank you. We are thinking along the same lines.
Carol?
Thank you both for your informative summary. My question is a hypothetical scenario, I would like to get your reviews on the process here. One of the main goals is to dismantle the affordable care act by whatever shape they can be clear about, how many bills to repeal -- appeal Obama care. Could it happen that the appropriators redirect money to the affordable care, more money requesting for the affordable care act? And then put the additional on that it cannot be spent?
No, Jim said the leadership --
Crazy idea.
No not at all, the leadership of the house said, no, it is not in their interest, because they are trying to stop ACA, it does not work. I do not believe, I may be crazy, I feel pretty sure that the president will not detail anything that will eliminate our ability to do affordable care.
I just want to say I represent primarily breast-cancer patients, 100s or thousands of people now have healthcare that they were unable to get before. Or deemed uninsurable myself included. Had that affordable care act had not been implemented. We need other states to cover men as well.
What people do not realize, they are going to be in it, until they are the empathy does not seem to be there. People talk about appealing the affordable care act. There are provisions that are wrapped up into Medicare and Medicaid. They certainly could make some changes if they had votes, but it is kind of concrete -- maybe not concrete but round.
We are always wanting to have a conversation to improve. I want to appeal the entire thing until they get over this leg. It is more creating a system a responsive system. There are things here, the colleagues who would want to appeal. They have done their right shots, we are always ready to have a conversation about improving access, quality, we are always going to be at the table, they just did not want to be.
When you are worried something is not correct, you always say I will fix it [Indiscernible] in conference. [Applause]
For procedural reasons they had not passed the Senate bill. There were a lot of things that could be fixed in the affordable care act. Many technical, so guess Jim is right, if we can all come together and make it better, then yes, there are just problems. You're right I will never say that again, we will worry about that in conference.
Vic?
In some meeting I get to ask some questions. That's right.
It seems to me NIH does a good job to point out through its activities that they are trying to translate discoveries into realities for patient populations. Patient centeredness is taken in the name, comparative research, CMS now with CMI, trying out large-scale experiment improvements in the delivery of care. It becomes an effort of communication to try to figure out where AHRQ fits. It seems to me one way of thinking about this whole thing. If we are trying to defend each of the agencies. Taking into an account historic trajectories. We think what the job is and how to deploy resources to get the job done, is this separate agencies collaborating as you point out? Is this best we can do? Is a better to have agencies and then find ways to find ways separately to fund them. Or deal with the continuum of research to dissemination, to improvement? Can we think about that? Strategically, is it time to reform, we evolved at different times should we think about the agency to the job? Continuously find out where we fit.
I think it is something to think about. I would look at HHS, I wish some of you could do these priority goals. We Duke -- do bring agencies together, there really is good collaboration and communication between the agencies. CMS, CMI is really looking at developing payment models to lead to better payment modules. They need information from AHRQ to understand what some of those policies will be. I think we saw that partnership for safety. CMS has to get the word out, you need to have payment structures to lead to quality of better care. CDC is needed to do surveillance necessary, somebody has to be thinking about what is the best way to deliver care? While we do have a quarry, there role is implemented by AHRQ . You need to get out evidence. It is something that we need to think about. Right now HHS has to do its job to bring it all together. We pay more attention to that.
[Indiscernible-speaker away from microphone] -- does that answer your question?
Sort of I guess what I'm thinking is as a system, you wouldn't be arguing about funding different components, it wouldn't fall apart?
No one argues, we have to have a base everyone is willing to ask top questions. To say that is not really my lane. People want to have the conversation. I don't have a sideload way of looking at the word -- world. We see the entire system right, this is the way that Ellen and six Cherry look at all the operating divisions. One great family at HHS, how do we marshal everything so that we are focused on one big enterprise focused on multidisciplinary mission. So it is not -- I am in the budget meetings with Ellen, it is never an argument, really a fascinating back-and-forth. People do not hold back. I have never been in a room -- this is just never happened.
One way to think about this. May be by analogy to the defense department. We are trying to create a strong defense, we have four different units. The Navy has airplanes. We do not say we do not need the Air Force because the Navy has airplanes, each unit is jockeying for resources, but they are one department to figure out how to create a strong defense. With Ellen her point is how to week improve safety and make it more affordable and accessible, the role that AHRQ plays is extremely important. As you point out, there are some parts of NIH, they are similar to some ways to what AHRQ does. Some parts of CMS , they are involved in some of the same enterprises, to my view deportation. But this is the argument that we need as an agency devoted to these three things I described. To make higher-quality, training, measures and data, this is not CMS brief, not NIH brief, it is not CDC brief, it is a distinct needs. To try to get the larger job done.
I think about it all the time. We have moved some of the administration. Both atare -- for instant CMS these are child -- challenged.
Putting too much under one agency things can disappear looking at CDC, they have a big mandate, Ebola was certainly a lot of time and resource to address. This is huge. I think we need the best way to cover operating divisions, to have a time to meet and also to work together to make sure we are not duplicating. This is always a challenge. This is something that we talk about it at our budget meetings.
Andrew?
-- I think we tend to look into academics, I think it becomes a nice to have. I think if I am a Republican sitting in Congress, what my constituency wants me to cut cost, I cannot cut costs, we have to be safe they are blowing up all over the world. I don't think they are hearing? I don't think they are hearing what AHRQ does to keep people safe, at home throughout the health care system, we need to make it more tangible. Otherwise there is no reason. There is a valid consideration, to go through the thought process. Why can't I departmentalized AHRQ? I can put different pieces in agencies and save money. If it hasn't, then that is an issue in itself, but I believe AHRQ should remain separate, to continue to exist, because it is so important for patient safety. In this country that we have, we have an independent agency that can remain agnostic on the political pressures that other agencies experience.
I would agree. I think you are right, selling the story, AHRQ is more about infections in hospitals, many people have had experience with friends and family, and they can relate.
We cannot get rid of AHRQ -- this is where you need to be you need to show how important it is. Health care is not something that you really think about until you need it. Sadly sometimes it is not a good experience, there is always a bad experience issue that people talk about. We need to get to a point where the department cannot cut, we do health care every day. We really want to continue costs, it is about healthcare. Making sure that people have the right information from the get-go.
I think if I had this it would be a lot easier to find than it is in AHRQ. [Laughter]
I mean Ellen you are the appropriator, I am always suspicious when people come in and save money. Especially when there has been a light on, it is a light eyeballing exercise, at the end of the day it is hitting your numbers. No one is trying to figure it out. It is just not done that way.
Yes I just want to mention if there is something important that has to be done, low priority for the big agencies for NIH, CMS. It has a difference in focusing -- I am happy that progress has been made something that is attract it politically, but I do want to say this other very important things, more than just basic research, applied research, there is a lot of basic research that nobody will do. Unless AHRQ does , they realize this year it has to take a back seat, we will spend a big part of the day on maps. This has been very valuable. Some of the basic research and we need to not lose sight of the value of long-term. For this year they could take a backseat.
Another argument is that we talk all the time about the exploding healthcare, the bout the basic -- about the basic research.
-- We try to make these arguments and we will continue.
I agree. If you look at the measures and data slide, we highlight some of the investments that you are referring to hear. -- Referring to here, we produce the infrastructure. So that we can understand where we need to make more progress. The likely effects of the Friday of choices we have.
Thank you Alan and Jim for spending time with us. I just have to say, one of the extra benefits I feel, we know Rick, is a big booster, you talking directly makes me much more confident that we have a whole team up there working on the agency, it is really terrific to hear you speak thank you for spending time and for all the work you are doing up on the hill.
Thank you for everything you do.
Back to our regularly scheduled program.
Thank you that was great.
Agenda for the rest of the hour, I want to spend a couple of minutes on research conference, that we had. Three weeks ago I think? A really exciting conference. In the general update, we have done the update out of order, and then concluding comments. We have a conference more than three weeks ago? It was a great couple of days more than 1000 attendees, 70 sessions, you can see the numbers here, a tremendous amount of energy. Annual research conferences almost a three-year hiatus due in part and holding any conferences we have had over the last few years, this is a chance for both arc -- AHRQ grantees, and also folks who were using data and working on similar types of problems to be able to get together and share results, that IQD -- a key new speech, also with Alex who is extremely sharp. And who has a lot of very interesting comments much in the realm of budget issues. A formal chair, at the Institute for patient family safety care.
Hosting this conference for the first time. Has been an art event cohosting which was very helpful. The conference was Monday and Tuesday morning. Tuesday afternoon the shared the session with a quarry, with the first research conference. A lot of people together, this slide shows distribution of sessions by track. You can see half of the sessions were on safety and quality, also around the folder ability. -- Affordability. Dividing the sessions and grouping them by three sets of activities that we engage in you can see pretty much equal across heavy on the research and evidence. We awarded outstanding research to Tim Brown comment Jamie Robertson, this is an article that came out in September, they showed state employees, or the system that covers state employees as well as other public employees in California moved to referencing employees moved towards lower priced providers. Higher-priced providers brought their prices down with no change in measure of quality of care. I agree I thought this was a very interesting and well done study our colleagues in office of communications and knowledge transfer. A bunch of people who are going to speak to you about two minutes or so[music] -- AHRQ is the agency who has demonstrated their commitment to patient safety. Engaging patients and families over 15 years.
ArcGIS the agency.
That role is critical, there is no other agency in the US that focuses so much on patient safety in the outpatient setting.
Arcs -- AHRQ mission -- there is no other federal mission other than that. This is extremely important, they are the only organization that has been interested in diagnostics.
-- AHRQ is measuring what is happening in healthcare, how we know the changes in the rules are making a difference. For example if we say we will not pay for people staying, being readmitted into hospitals that a sort time, does that make a difference? Yes it does. Some of the work they have done on readmissions, and the effectiveness on preventing in the hospital acquired infections for example, has shown many lives are saved. If we do very simple things.
-- AHRQ is a major funder of prevention research, this is a major sect your on how to -- sector on best practice, in my case they have been a major funder for antibiotic resistant organisms, or superbugs, trying to get them down in hospitals, nursing homes, in the post discharge setting, to reduce risk.
-- AHRQ has created the tools that everybody made care much saved her -- safer in the hospitals. Project read is not the center of thousands of hospitals to reduce, it will save us thousands of dollars. If you look at the CUSD program, that is improving. Or you can look at teen steps, using this across, getting teamwork really getting good and working in hospital units. This is a track Reffner -- track record.
[music]
The testimonials from the conference. You all have been patient. I will ask questions on the way. I want to come back and get your reactions to the screaming I started out with.
Who are the thousand people that go to the conference?
Many of them are grantees and contractors. Quite a few, to learn about the work that is being done. Heavily academics, other folks from government agencies.
Some insurance in the hospital systems, they are very [Indiscernible] -- we are looking to do analysis to see who actually came this year, in the past, we have not.
A bit on general updates. Then we will come back. We are moving finally. This has been years in the making at least five. Certainly I have been here at AHRQ for two -- the anxiety about the move, you can imagine is tremendous relief to have done two thirds of it last weekend. A couple of hundred people moved, trying to pack up offices, yesterday they showed up at 5600 Lane, which is the park line building, the other third more or less agency will move next weekend, week from yesterday, we will be fully in our new quarters. Here are some photos. Have done a nice job on renovations. A lot of light in the building, for those of you who know I described the old one cross between a submarine and a prison. [Laughter]
The new space we are in is much nicer. Having said that, we are moving from 300 people, all of whom are in offices, 270 offices and 200 cubicles. That creates anxiety and change. The first day in the new space, a lot of positive energy. So often anxiety was before an event, then the event comes and, it is great. We are looking forward to the new space. Already mentioned. I want to thank Jay, Andrea, Carol, Victor and Jean.
Please pardon the interruption, if you would like to continue please press Star 1, or the conference will be terminated.
Thank you all. [Applause]
Great work very helpful. Personnel announcements, Steve Cohen, many of you know for the Director. of Center of access and cost trends, for 15 years or so has retired, Joe: who is not Steve's brother, [Laughter], is the new director of the center, they are very excited about the leadership. Also one who was running the division of the center, now he is the associate director, Joel was also running one of the divisions of research center, there were two research divisions. If we are combining those, Tom Seldon who ran modeling simulation, will be running the combined division. We miss Steve who did spectacular work over the 15 years. Building and strengthening the medical expenditure, but we are quite excited about new leadership, very confident that Ellen and Jim's budget is correct, moving forward. [Laughter]
We have chosen a replacement of Irene Fraser, the name is not here, we are still working through personnel issues, but we hope to announce this director soon. In the past, for the director of Center of evidence and practice and improvement, Eileen is here and will lead the next section, she has come on August 9 I believe, she has been a tremendous eight energy.
David Myers I think you all know, has been chief medical officer for a while, but had been acting director for practice and improvement, what Eileen and her arrival in August, now David is full-time. Doing a great job creating connections with a variety of professional associations working also on collaborations with other agencies. We are delighted their.
I want to give you a second on a meeting that we had a month or so ago, was Sherry Davidson, she helped us with meeting with half a dozen or so folks with various health insurance, third-party vendors. To get a better understanding. Done in collaboration with [Indiscernible]. To get a better understanding of these insurers and what they are doing around price transparency for members. Trying to choose a physician or a hospital, what information do I have? What do I have a available? Trying to understand what that landscape looks like. How it should be. How that information should be approved. Main lessons virtually all large insurers are providing some information to their members on out-of-pocket cost. Harder job for small insurers, this is not likely used. The limited availability of information on quality is a major challenge. We do not know just what the price will be but quality, but it insurers taking the third-party which is available and make that available to members. For the most part it is not what people find useful. This is an ongoing challenge. Let me due to more slides.
Part of what we heard in this meeting insurers are gathering patient narratives, what do patients experience when they receive medical care? Of course through consumer assessment plans, it is now going into experience, into the hospitals, and ambulatory care. The agency has been investing for 20 years. How to elicit information from consumers, that will be useful both for patients trying to figure out about where to get care, also for providers on how to improve the patient experience. We have through the's program, and the science of public reporting grants, awarded a few years ago in collaboration with CMS, and funding. Researchers at yell, and colleagues have been working on how to elicit information to patient information narratives that would be useful. Making progress, it is striking to me and many others when we are trying to make many choices in our lives, going on the web and seeing what other people say about the choices. For medical care, that information is not available.
It seems to me you brought together the industries and insurance companies, think what we kneel at -- need to pay attention to is their health, which has managed to solve some problems to bring transparency. If I ask, they have many reasons not to do things. Patients are paying a lot more? They care a lot more, they have skin in the game, and I feel it is urgent that we prioritize getting access to cost and quality, to patients. -- Maybe this is critical for AHRQ to be working with them to find out their findings, and their cost in quality.
Excellent point. Not at this meeting, but we have been speaking about some work we talked about last week presented at the health data organizations which was linked closely with the folks -- at Stanford University, they are working with the AP CD counsel a development of measures both on cost and quality. To apply to APCD data. Part of what is needed for APCD's, to show the use case. The lesson I have -- the state started to apply these measures to their data, as a part of the process. They figured out, it seems the data seems more than what we are expecting. The quality of data, the project with Stamford and the AP CD counsel, it is intended to develop measures, and try to hopefully lead to improvements and quality and standard quality. I agree.
Thank you.
Spending time and money in this area, there is always good idea, I wonder why consumers do not use this data. To some extent, there are some explanations on why they are not acting on them.
This idea about healthcare and we want to be surprised -- for this database it comprises of this to consumers rather than from loyalties and other features, is there another argument? To show transparency and the directors award, maybe they would actually do this himself, some quality and magical thing they could do to healthcare, beyond the individual -- consumers will act like consumers if usual -- you will just billet.
Not about price at all, is this value? Some of the work we have done on science and public reporting to suggest yes, I wouldn't say definitive, do people want to know what other folks experience and what it has been? The main way that we have people coming to a new place, you ask your neighbors were to go, this is a possibility of trying to get more systematic information and may be more reliable information then asking your neighbors.
Yes.
I think it is to the extent, price information will be useful clearly it will not be useful to Carol yesterday, figuring out what ye are to go to. For some people with high deductible plans, we are increased simply seeing a choice, price may matter some, but elective surgery price may be some, but in other cases where it does not matter and shouldn't matter.
Paul?
This is my last meeting what the heck. Some do not want consumers to be using this in addition to not having their information on quality, much of this is on unit prices. This is not where we need to go in American health care. The reference pricing I think is a step ahead, based on the assumption that you are doing appropriate surgery, whether or not they need the surgery, they may be able to deliver the total health of care, -- it is waste to -- way too expensive.
Carol.
I am going to defend's. This is one of the things -- defend Caps. Dashed this is one of the things I'm sitting at a this table it is become evident to me in the past three years patients through trained advocates are not included, that perspective is not included in the research being done we focus on cost and efficiency, this survey gets down to the real patient centeredness. This is where we can help to identify measures and the information presented to patients, the choices they are given, and the respect for cultural and personal preferences. As far as I know, this is really where we get that, and the tool that goes into the measure and research that are developed. It is easy for a group of medical providers and all professionals to sit around and develop measures. -- There is something wrong give people are not being respected.
Thank you Carol. I strongly defend CAHPS -- which has led to improvements 2015 CAHPS database was just released, updates, we have seen on Medicaid and the private insurance side, slow but steady improvements. And what patients report. They don't fully understand why that is, I think it is most likely because physicians and hospitals other providers are try to improve them. That is extremely important and valuable having said that. I think that is not yet information in large numbers of patients find valuable in making choices, it would be the kind of question what kind of investments might be useful to produce returns and more valuable.
Right it is a way into the research process that is a step.
Just to be clear on my comment. Off this comment, it wasn't to be negative I actually don't think they have to act on the information, my personal belief I believe with support from the literature, having the information transparently has caused the system to respond trust me I work in a system that pays a ton of CAHPS measures, we have done a lot of improvements in that area, I believe voting with your feet is one mechanism. It has not been that effective as people hoped, we see a lot of action from players to respond to that action, I do think investments would be worthwhile even though it did not match our notion from other consumer products and how we thought the motivation might come. At the break I will tell anyone who is interested my first experience sitting on the hospital board not with the organization I'm in right now. -- To watch the journey inside of systems. I think investments have been worthwhile so. [Captioners Transitioning] [Captioners Transitioning, Please hang up the phone line so that the next Captioner can call in. Thank you.]
We are seeing employers moving towards bigger pharmacies. We are also seeing a layer on a level of advocacy or the ability to navigate. You can call into your health plan and they will help you use the tools for the right doctor and hospital. If you are looking for behavioral health from a you should use those services first because they are free. Or if you have a second opinion program and you should follow this process. Maybe you shouldn't be going to surgery at all. You should be going back to your primary care physician. They are linking things such as Best Buy drugs or the list of things you shouldn't have done some are choosing wisely. A lot of these things are pulled together, all of the technology that exists. Employers are putting their employees from a high deductible health plan, in this case they want to give tools to navigate. We may be seeing low [ Indiscernible ] in aggregate but once you like it you keep going back. I think we will see that continue to evolve over time, especially if the high-quality -- if we can identify those best services, which many companies have services of excellence. We are seeing a lot of activity in this area, links to telemedicine which has grown tremendously in the last year on the commercial side. Hopefully that will continue.
One of the things that is happening with identifying the consequences is, there is a transfer of a lot of work to patients and families. Some are happy but some are overwhelmed. In July this year, we saw a national sample of those over 65. 40% reported being asked to do too much. We complain about people being noncompliant but they are overwhelmed. Now they have to shop around and identify services and these sorts of things as well. I worry about the fact that we think that one of the ways that dealing with multiple payers and multiple providers in a market-based approach, is people can shop around and get the best deal. We think services are getting better but in fact sometimes we are causing people to feel this is very complicated and overwhelming.
I actually think our job is to make the case that people don't have to shop around to get the care that they need at an affordable price. That requirement that people shop is something that I think we need to do away with and make it -- [ Pause ] -- I do think that the pressure and threat of that and attempt to bring attention to what it is that patients want and need is absolutely critical. That is the voice that has largely been mission -- missing. I do think people not having to do all of that extra work to get the care that they need to something that will continue to be a mission.
Listening to this discussion, there are two directions that we are headed in. We very much are headed into the high did a double transparency notion with the burden on the consumer. I think many of us believe, and it may very well happen, to shift responsibility to delivery organizations to be managing care. I think one thing that is good about CAHPS is the fact that the CAHPS instrument is relevant for both worlds. It is probably the only one that is. I think it is probably even more important for the world of more organized delivery. That's why I am enthusiastic about keeping going with it.
I think a good argument for transparency is that many providers don't understand that they are outliers until they see it. Overnight some of their will be change once they understand that. I think what CMS is doing around better monitoring, is driving some care [ Background Noise ] Patient safety tools.
And the analytics as the New York Times. -- [ Indiscernible ] [ Laughter ]
Thank you for the helpful -- comments all around. I think Paul, your comments were a good segue to the next slide. In early September we talked with you about the [ Indiscernible ] but since this was actually funded, Dartmouth NPR brand -- [ Pause ] -- Have created three centers of excellence he studying what health systems are doing to disseminate patients and outcomes, and more broadly, what else is observed to try to improve outcomes that patients care about. We will be working on developing measures, system performance, five-year grants. I am quite excited to see these three centers with a variety of collaborators. We have also been doing a bit of work internally on trying to describe how systems and measures of performance [ Background Noise ] This slide is very preliminary. The data will certainly change. This comes from data from SK and a -- SK&A which is a corporation bought at by IMS. Again, this is very preliminary and these numbers will change. But it gives some sense of the extent to which physicians in different parts of the country are part of the system. SK&A's definition is one more hospitals that own or manage the community-based physicians. The definition is a little unclear. [ Overlapping speakers ] there are many different ways to describe it in this is one definition of the system. By this definition [ Indiscernible - low volume ] [ Laughter ] We have not share this information with our chair. [ Laughter ] It gives some sense of the extent to which different parts of the country, larger or smaller fractions of those are part of this. By this definition come of this data and in some of the upper Midwest, --, in some of the upper Midwest more than -- more than 46% are in a health system. In other areas it can be as low as 30 when to 28%.
[ Indiscernible - speaker too far from microphone ]
This does not include that for the most part.
[ Indiscernible - speaker too far from microphone ]
Can you turn your microphone on?
My wife is part of the grooves -- a group of 500 oncologists. They do bundled things with CMS. US oncology [ Indiscernible ] one out of six people in the US are being treated with chemotherapy. This is being managed on the US oncology site. They are not part of the hospital base. There are many possible definitions of what a health system is. This map in particular has one particular definition, which is a health system is one more hospitals that or manage community-based -- own or or manage -- [ Indiscernible - low volume ] There are many different ways of character writing this. This is one way of trying to do this, one view of the world.
I'm sorry. I don't need to pile on. [ Laughter ] [ Overlapping speakers ] I can't think of a worse definition of systems. This is like hospitals buying other institution solely to keep up [ Overlapping speakers ]
Or at least relabel this as physicians and hospital owned or hospital-based health systems. We want to make that definition clear.
I was going to go back to the slides. I wanted to make sure that we were done. We were going to change that definition earlier on the dissemination centers. I know this was -- is designed to think about our relationship in terms of to partner. I'm wondering if this is a little bit broader than thinking about what are the characteristics of successful systems that apply evidence. I am very interested in what this agenda is and what its mission is and whether or not there might be an opportunity as an advisory group that we might here earlier rather than later, how it is that they are pursuing this agenda. I think there is tremendous opportunity here for AHRQ I am and --. I am interested in seeing how narrowly or broadly defined objectives are. I'm interested in hearing more.
There's surely an opportunity for that. I did not mention on the slide, we will soon the awarding a contract to a coordinating center. One of the functions is to create a technical expert panel and have a variety of folks on this to get input. We will bring this back up to you.
The agenda is quite limited to thinking about people or evidence -- is the agenda quite limited to thinking about people or evidence?
No, the centers will be much more broadly used to try to understand what health systems are, back to the previous conversation, and what they are trying to do to try to improve outcomes and to use resources wisely. It's a much broader agenda. I just wanted to give you a brief update on an initiative. Grants were made to seven regional cooperatives in the spring to conduct the overarching evaluation. The grantees are in the process of recruiting practices, both physician and other practitioners, and are scheduled to be done with that recruitment at the end of the calendar year. There are about 35 -- this is a little old -- there were about 35% of the goal recruited today. Moving along, we have worked am -- on aligning measures across the seven grantees. I think this is a very exciting project and one that is moving along on time. This is the plan for telling the story. We will be putting out this fall, a report with the evaluation metrics. --, Which the grantees will be using on what people or evidence they will be working on disseminating. Next spring there will be a snapshot of the primary care practices that have been recruited. In the summer, some baseline data on the ability of these practices to incorporate new evidence and then next fall baseline data on performing some alcohol, blood pressure, glycerol [ Indiscernible ] tests. Moving along, we will not have until 2017, information on -- to the is staying -- to the extent of what the primary goals are and whether they had been achieved.
This is very similar to the QIOs across the country. QIN-QIO's are working on this as well. They are targeting small practices. I was wondering if there was any requirement for this original cooperative to work with the QIOs and coordinate within the state they are in.
We have strongly encourage them and have worked with Paul and colleagues to try to make sure that the QINs are aware of what is being done by this set of regional cooperatives. Maybe you want to say more about that, Paul.
I think this is a new reality. I have been doing large scope by him for CMS for 14 years now -- volume for CMS for 14 years upper I never seen a period of time with this many resources available as we have no. I remember -- if someone had ever told me we would be in a position where we had so many resources we would not know what to do with them, I would not have believed that. We are convinced that the two projects known as -- TCP I and [ Indiscernible ] the overlap is really miniscule. I think what Mary is saying about the QIN-QIO's is valid. I don't have a solution for you today, Mary. But we can talk more. I think the reality of having clinicians that are in the field receiving resources that they never could access before for many different areas is a new reality. I for one, celebrate it because it means we have resources to do this work, but we have to be smart about this because people are more skeptical of these resources in providing oversight and demanding to have proof that there is no duplication of effort. I would rather have that problem, Mary, not have enough resources.
I agree. We are happy that we have partners. At the front and, at the practice level, or whoever we are targeting, whether it is hospitals with the HENs or physicians practices, we can be inundated. We have to streamline and coordinate so that we don't overwhelm the practices.
It would be good [ Indiscernible ] actually put in contact requirements for the HENs to coordinate with the QIOs and similarly on the QIOs side. I think this is wonderful. I just wondering if there are these kinds of requirements on their side. We can reach out and work with them.
[ Indiscernible - low volume ] Promised to be working with other folks in the community [ Indiscernible - low volume ] These are all very substantial regional collaboratives. These are major actors.
One other thing I wanted to add is we don't have a final -- final evaluation from the partners yet. I just want everyone around the table to know that we don't have proof for this but I hypothesis is -- our hypothesis is, one of the things that leads to profound changes in national measures is the alignment of multiple levers, all some of pompously -- all simultaneously and multiple payers in multiple areas of the country and technical assistance for many different directions, all at the same time. That has never happened before. It is happening now and it is associated in time with some pretty profound changes, particularly [ Indiscernible - low volume ] We don't have proof for that. We have a lot of people working on it right now but we do believe it is a reasonable hypothesis and something we are taking seriously.
I think I just want to echo what Paul is saying. We need to be small about this, especially seeing on the front lines, primary care practices being inundated with assisted health. How do we sustain the promise of primary care programs? I've heard a lot of people talk about need for coordination of care, partners to help navigate obligated hospital system and health plans. Primary care needs help and they need the help long-term to modernize, to be the patient centered partners that patients in this country need work --. There are a lot of resources now but there is a cliff. Many people are seeing not coming. Rather than a three-year grant that ends and all of the resources go away, how to be assessed for the long-term and make sure this is sustainable? I really want to see the three centers continued at Dartmouth, RAND and [ Indiscernible - low volume ] Can they help us understand the dissemination of PCOR and extension programs, in some way to help us understand how we make this permanent as opposed to a temporary influx of resources that then goes away.
I think the centers will help us understand the conditions under which they make investments. In that way, we will help. We thought a lot about sustainability before we provided these grants. The evidence now is there is a -- the grants are substantial among themselves, working with thousands of primary care physicians but there are many more across the country. There are many clinicians and small practices. The sustainability months old provides the development of the research and evidence about whether it works. They thought about sustainability is if we have clear and convincing evidence to practice facility -- that practice facilitation and other [ Indiscernible - low volume ] Work. Then private payers and CMS and health systems will be motivated to adopt that evidence and work overtime. There is not -- I can't promise my colleagues that CMS or private payers or health systems -- that they will necessarily take up this evidence. When there is clear and convincing evidence about something that works, and that it works with the workflow, and ways to implemented that make it work, we see improvement.
Are we looking at ultimate [ Indiscernible - low volume ] We can give practice all of the help of they need but if they are needing to be reimbursed on a fee-for-service -- [ Overlapping speakers ]
I think you're right on target. You are painting a picture of what this looks like. I am not sure to claim that we have perfect yet. One of the reasons are technical assistant levels are located in funded out of the innovation center is precisely because of what you are talking about. Every we, we have meetings -- to take one example -- CBC I primary care physician which changes the model and provides information -- we are exploring actively how to take that model once it is certified by the actuary and can be sustained in a realistic way, and Marriott together with the systems. We provide the awareness, the technical assistance. We have to go further than that. -- In quality improvement. I think this is what the QIN-QIO has been questioning for the past 30 years, how do you go from --. How do you go from a simple single pair system to this? That is a hard answer. That's the definition of the CMS innovation center. There are a lot of people working on this.
I'm going to ask you to hold. I want to quickly go through a few other updates. There is a listing here -- I'm happy to answer any questions. There has been a lot of activity from the task force is the last meeting as well as the evidence-based practice centers. It was -- I'm not going to go over that in the interest of time. Want to briefly mention one of the posters that was presented at the research conference, work that my Greece has been doing at the University of Toledo, I think. This is been on a kidney donation program which is working with transplant centers around the country to get very kidney donation more widely -- para-kidney donations more widely implemented. We are making some progress on this. It is still pretty small but there are 30 additional centers -- plans for this to be growing. Another one of the [ Indiscernible - low volume ] We released -- I mentioned this I think at the last meeting -- fast stats which is connected to the healthcare cost utilization project, the website that is providing much more -- access to much more updated data on hospital discharges than was previously available. Past facts now has more data from a handful of [ Background Noise ] Many states were 2014 data. Kaiser family foundation used the Fast Stats data to do an analysis of changes of hospital stays for Medicaid extension and non-expansion states. It showed that a number of inpatient states funded by Medicaid [ Indiscernible ] [ Background Noise ] The big decline in uninsured discharges. We are still looking into this but another teaser an interesting part of this is on the left-hand side, the total admissions appear to have gone down in both sets of states. Again this is only full 2014 data. We only have it from a subset of states. We are still doing quality control on this and trying to figure out what this looks at. I think it's interesting that in 2014 when insurance coverage expanded, the preliminary suggestion is that total hospitalizations went down.
One thing on fast facts -- Fast Stats, does that allow people to implement tables [ Background Noise ] Or is this just to look at each table.
It has a limited ability for users to construct tables. It does give access to micro data. It has limited table structure -- [ Overlapping speakers ]
In my experience this was used heavily.
If you have not used it, I would encourage you to use the query tool which is HCUP net which works on the full set of HCUP data which is a pretty broad set of query end table creating capabilities. It's a bit clunky and we are in the process of re-designing it to make it more usable. The query function that's on Fast Stats is limited at this time. We are looking to expand it. I just wanted to mention that in our authorization statute, we are charged with creating a national center or doing work to have a center for primary care. As part of the Senate -- Center for practices improvement, we have began the national center for excellence in primary care research. This is charge with fostering collaboration internally and externally and being the plan of contact -- point of contact for the primary care community. We have quite a few investments in the primary care community. We are looking at building of the national center for excellence in primary care research. To work in progress and we will keep you updated on the. I think in the interest of time I will skip over these slides and ask if there are any questions. We are a little bit over time.
This is Sandy. Can you hear me?
Yes, go ahead.
I think there are a lot of unique things that AHRQ does that need to be underscored and continued. I think things you just talked about are really important, HCUP and the user network's and all of that stuff. I just want to see if -- I think it's important as part of a strategy going forward, that we make sure we include a component of basic research in whatever programs we do. For example, you mentioned organ transplants. AHRQ funded -- Mark Robertson others early on -- fundamentally looking at better ways of transplanting the organs that we have and figuring out more appropriate times to transplant and better ways of selecting transplants. I think what AHRQ can offer is a currency operation where basically -- maybe this is something we should try to prioritize -- because of the other tools and capacities, the agency has the ability to be rapidly adopted, adapted and diffused into the user population. I think if we don't adequately fund the front part, it's just going to become more of a application of what other people leave us, which is often going to be inadequate.
I agree completely Sandy. I tried to emphasize that. We do three things. We fund research and evidence. The basic research come --, much of which is investigated or initiated, the crucial piece is to figure out how to make improvements. The work that you mentioned that Mark Roberts did is a piece of that. [ Name Indiscenible ] early work was initiated from AHRQ . That's a crucial part of what we do to create and make progress.
On the primary care side, I'm not familiar with this at all. It is an issue -- [ Pause ] -- We are going to go back as we have done for the last seven or eight years looking at the issue of the adequacy of primary care -- the primary care workforce in the US. It looked like a lot of us were looking to see how to help primary care be more effective. But there are many issues swirling around the future of the primary care force. Do we in fact, need to change physician payments to make this a more attractive option for medical students. I wonder if the future of the future adequacy of the Mary care workforce is an issue that you are taking on.
It is to some extent, but largely through trying to understand and make progress around primary care [ Indiscernible ] issues and team-based care approaches and trying to produce evidence on what sorts of configurations primary care professionals are producing outcomes that patients care about, more so than -- we are not doing work at this point on how many GMA slots there should be -- GME slots there should be.
10 years from now, whole will be delivering primary care?
That I'm aware of, we don't have active grants in that area. Certainly to work around what does the configuration of professionals -- what should that look like -- is very much a part of what we do around delivery systems. What is the mix of primary care physicians, mid-level practitioners, other kinds of folks in a primary care office? What do you need to produce high-quality, efficient care, is very much a part of our work.
I want to come back and see if you wanted to bring back your comment.
[ Indiscernible - speaker too far from microphone ] [ Laughter ]
You mentioned you wanted feedback about the framing, Rick. I am puzzled on how you establish research and evidence. I've always thought that evidence just describes observations and research adds rigor to that. They kind of end up being the same. Is there any reason to stressed in wish -- any reason to distinguish the two?
There is no reason.
The other thing I thought was interesting, the way it's set up right now is that the training and [ Indiscernible - low volume ] [ Indiscernible - Intermittent Audio ] I was thinking about investing research and data should [ Indiscernible - heavy accent ] If your elevator can only go to one floor, that doesn't give you many choices.
[ Laughter ]
This might fall into the category of being cute. I also wanted to comment on the framing issue a little bit. This expands on something that I heard Paul say earlier. Maybe this comes from my background as a pediatrician and having to take complicated things and get them down to a sixth grade level or something like that. In trying to tell the story quickly and to make analogies that can be understood, in some cases, by people not familiar with the healthcare injury or AHRQ for that matter , I think focusing on the three areas that you described where Mark -- where AHRQ makes the difference, the issue of hospital infections, for example, falls squarely on the improving care issue. This doesn't fully explain in depth what the agency does. If you look at the other two, investing in research and measures and generating data, it's fundamentally about the development of intelligence. If I were making an argument to certain individuals, I might say, you know how we have had trouble in recent years and foreign policy, where we have had a deficiency in human intelligence assets, and therefore have made mistakes in judgment or have entirely missed phenomenon going on around the world. If we had known those, the range of decisions that decision-makers would've made would've been much more accurate. The same thing is true within United States, and particularly in healthcare, which is the most competent a part of the American economy. AHRQ is the center in many ways of the development of this sort of intelligence. Were we to underinvested not, we would have a parallel problem with that. Just wanted to come up with an argument that would take the other two parts of work.
[ Background Noise ]
I was reacting to the page on investor -- investment in primary care. I say, that's great. More primary care research is good. I've been saying this for a while. One of the issues with employer healthcare is they haven't embraced the new primary care medical homes or ACIOs to a big degree yet -- ACOs to a big degree a. I think partially we are hearing that we want others to show that it works. What can employers do in this space and how do we share these initiatives with them or at least the results, so that they can buy into the products that their health plans are building for in the future. That's one of the questions I wanted to put out there, to figure out how we could capitalize on that.
That's a good question. Let's work together on trying to figure out the answer.
We have managed to talk through our break. The good news is we will still take the break. If you can make it 10 minutes instead of 15 minutes, so that we can reconvene at seven minutes before the our, that would be terrific.
[ The meeting is on a 10 minute recess. The session will reconvene at 10:53 EST. Captioner on standby. ]
We are going to try to reconvene. We are reconvening, ready or not. I am delighted to have Arlene with us officially this time, as opposed to unofficially last time. She will give us enough they on the H I T strategic winning work. -- Planning work.
I want to give a brief introduction of Arlene. As you know she joined AHRQ in August . Arlene is an internist, health services researcher, prior to coming to AHRQ was at the University of Toronto where she was the inaugural holder of the health Council chair and a senior scientist of [ Name Indiscenible ] knowledge Institute at St. Michael's Hospital. She's an accomplished person and Sharon and I and many are delighted you are with us.
I am delighted to be at AHRQ . Yesterday I learned more about all of the amazing things that AHRQ is doing. We are in the middle of our strategic planning project I am here to get input from you on the process. We started by looking back to see what AHRQ has done previously and how we can build on this. Basically they had been doing this since the 60s and it's very much aligned with what Rick's goals are for the framework. The research assesses the effectiveness of new health IT solutions, evaluates the impact of health IT on quality and safety and works to take sure that evidence is understood and used in practice. Health IT is for implementation of this practice. Over the years AHRQ has invested in grants for more than 180 institutions in the US and Canada. Just to reframe it in terms of Rick's framework, we invest in research and evidence to understand how health IT can make healthcare safety are -- safer, we want to teach professionals to use health IT in care and to generate measures to improve and track performance. We started by looking back over the portfolio and seeing places where AHRQ has had an impact . You had a short handout that we put together after we reviewed the work. AHRQ has done foundational work in many areas of health IT, telehealth, health information exchange, E prescribing, clinical decisions, learning health systems, patient safety, distributing research in primary care and creating health communities. A number of these projects have had quite good of an impact. I will give you some examples. I think our task now is to get out where we go from here, in a time of limited research is -- resources. How can we strategically target these health IT resources? I want to give some brief examples of some of the work that we have done. Some of you may be familiar with some of this work. One of the successful projects that AHRQ has supported is the electronic data -- message forum which is alerting people doing research on and implementing health IT in a host of settings and it is alerting the researchers and researchers in informatics and -- informatics experts. They are doing their own research and own -- and their own interventions by putting collaborative project together across the network work one example of something that has come out of this was the E consent which is now in apples research kit -- Apple's research kit. They also created something called EGM which has published more than 100 papers already. I think that is something -- an example of AHRQ's work as a catalyst. I have a couple of slides from the work of the EDM forum. I want to at knowledge the people in the planning process for health IT who are here in the room. Ed, the acting director of health IT. [ Name Indiscenible ] who basically was the lead for the EDM forum -- for the agency. Sharon and aiming. We have all been working on this together. I have some information to share with you as far as the process in which data is collected and turned into knowledge, collecting information from multiple sources and finding ways to share in aggregate the data. And converting that into various decisions of support within practices and tools for improvement. One project that was funded through the enhanced registries was improved care now which is an inflammatory bowel disease Registry. This now actually includes approximately 1/3 of all children in the country with inflammatory bowel disease. The rate has improved from 55% in 2007 up to 79% in 2000 and -- in [ Indiscernible ]. It is doing research and providing training and improvement in generating data that is useful for multiple uses. I am sure many of heard about project echo which was to support rural practices. The reason I put this in is an example is because this is something that has become self-sustaining. It was initially funded by AHRQ to focus on hepatitis C and has now expanded and has been adapted for implementation. There are other examples of AHRQ doing funding of the basic creating the networks have become self-sustaining. Another example is [ Name Indiscenible ] which is done a lot of work in improving primary care.
This is now a sustainable network. In your packets I also included a link to our Big Data brief that gives more detailed examples of some of these projects and what they are doing and how they have impacted. I knew for this year in 2016 and Ed is leading this effort, is dissemination and implementation of patient centered outcomes and findings report. This is a multi-[ Indiscernible ] initiative [ Indiscernible - low volume ] Clinical practice through clinical decision support. It was -- there was a notice of intent in 20 -- July 2015 that lays out the goals of this project. It has multiple components, both contracting grant mechanisms to engage stakeholders, develop and expand clinical decision support applications, develop prototype type of tools. We have a request for applications were a learning network that is going to close in a couple of weeks in the goal is to put it -- put a learning network together, before -- [ Pause ] -- Releasing of the foundling -- funding opportunities. The idea is there will be an infrastructure and people working on different funded projects to share and collaborate. As part of the process, we consulted quite widely. One of the questions we had was with marks monist resources -- with AHRQ 's modest resources should we be doing this. Other agencies in the private as well as public sector -- [ Pause ] -- We spoke to people at CMS, CEA, ONC, a number of foundations in this area as well as some academics and commercial vendors. What was rewarding was everyone said yes, AHRQ plays a unique role and should be doing this. The other thing was that people were all over the place the there were some people wanted AHRQ to do 100 different things and we clearly don't have the capacity to do that. We sifted through all of the input and came up with a set of criteria for where we should focus in their -- this is where we are asking for your input. There are three things related to management of patients and patient centered care within and ambulatory setting. We decided we were looking for things that aligning with AHRQ's mission and not duplicate test. Things that could actually have an impact in a relatively short period of time such as three years. The three buckets that relate to practice care patients in the community are patient care outcomes and generated data. I have some slides related to the -- that after this. The issue of care coordination and integration which has been the holy Grail common there may be small pieces of that that we can tackle and also the need for population health management at the practice and community level. That is where I would like to focus the discussion this morning. Patient safety is a huge part of AHRQ's health IT portfolio, both health IT to make care safer and safety of health IT. I will leave that for this afternoon when we have the discussion around diagnostic errors. The other thing that AHRQ has done -- the question we have is supporting learning [ Indiscernible - low volume ] Like CDS. Is this a function AHRQ should do. Should we continue supporting things such as this. I also wanted to give a bit of context. AHRQ funds the health IT research portfolio that has designated dollars. Health IT is increasingly an integral part of other work across the agency. A lot of the investigator initiated research uses health IT applications and solutions as well as other targeted [ Indiscernible ] I wanted to give a brief example of the patient reported outcomes with patient generated data. The EDM forum has a manuscript that is in the process of review. It looked at the use of patient reported outcomes in a practice. There are -- this has been widely used in surgery, hip replacement, paying, oncology, in terms of symptoms. This hasn't been used as widely and primary care and other ambulatory practices. The idea of collecting data through IT at one time that serves multiple purposes -- this is a framework from the EDM forum, which talks about data from patients and coalitions to make decisions at the point of care, the need for hospital leaders, quality improvement, value-based payment and management of populations, and also researchers in primary care and public health. If you can get the patient reported outcomes data, how can you use that same data so that is -- it is accessible to be used in multiple ways.
This is a further development of that framework that breaks down the users who have what and why in terms of visual reporting outcomes. I am sure it's two -- too small to read but you also have it in your packets. Quickly, in terms of the bucket of care coordination, we have been talking to ONC soul sleep -- closely and also -- this has been challenging. They have developed a shared care plan which could be part of the health records and shared among providers of different systems. There's not a lot of evidence this works. We need to test some of these things. Is clear that CMS, ONC have different roles than AHRQ . And AHRQ as a unique role in figuring out what works in practice. The other every get is population health management with practice level analytics. The evolution of technology, it is becoming -- there are tools that can be put on the electronic records to make it easier for people to manage populations, both at the practice and community level. I think I will stop there and open it up for discussion.
This is my last meeting. My frustration at you convening all of those people in components and patients were not part of that. If you ask patients -- we have done this whole thing backwards. We need to ask patients what their expectation is of health IT. The industry that has been developed never took patients into consideration. They are vast industries. Now there is an industry that just takes information from one system to another system. They are charging a lot now for access to the electronic health records. I think our failure as a health system, in the country and the ability to talk from one system to another, is such a disturbance to the health for the patient and patient safety. If there was anything that you could do that would address that specifically -- I get frustrated that we don't talk to the people. The purpose of this all is the patient. Thank you.
Mary?
I'm still looking for the voicebox. [ Laughter ] I love this opportunity. I don't know if I am a lump or or not. -- lumper Or not but I am wondering if you think about comprehensive patient care for people with complex conditions as far as where you want to go.
[ Background Noise ]
There are issues as far as credit -- care transitions and thinking about the tools, predictive analytics, with work on learning systems, learning health support, learning community, being the ways in which you continually move knowledge and advance it. It seems to me, if we separate all of these elements, I am not suggesting -- I don't know where you were going with the focus -- that we have one kind of learning that would evolve from that. If we conceptualize it as part of a process that is going to feed an agenda around population health management, especially for the vulnerable population, we must follow them in the society. I think we potentially have much more to gain.
[ Overlapping speakers ] I love your comments. I think the move, both care coordination and integration and patient recorded outcomes is the move for recording [ Indiscernible - low volume ] In the sector. I think about ways to do that. The other thing we are essentially focused on his advancing model care for able with multiple and complex conditions.
One of the things that's most intriguing is the potential for advanced analytics in using attic -- aggregated data which is something coming from Stanford. Have you seen their publication on the green button which is analogous to the blue button at the VA. They talk about the green button to identify patients who are like these under consideration, complicated patients. No one knows quite what to do with these patients. The green button allows you to search the entire database across multiple dimensions to find other people who are most like this patient. They have a couple of anecdotal reports of some interesting applications of this technology. I was wondering if you are looking to that sort of I advanced -- sort of advanced matching of searching technology to help with complex patients.
We have gotten people -- the list of people -- things that we have gotten that we can focus on is huge and data analytics. Personalized care and the use of Big Data to support that is clearly one of those things. We figure maybe over the next two years we can pick perhaps two or three of these things and deal with this with limited resources. We haven't decided on anything yet. We are still in the process of our planning. We want to get those ideas where we can get the biggest impact, targeting the things we should be targeting.
Okay.
Arlene, I have some quick questions about the work you are doing around clinical decision support. The first one is, are you including vendors in this work as well as other stakeholders? The second part is, are the vendors cooperating? [ Laughter ] The third part is, this may be early -- where do you see the direction? Is this going to be something that the vendors build into their systems, or something where there is a capability within the system to be customized, particularly by large health systems, to build more user-friendly and more locally recognizable decision support processes. There are arguments for that as well.
I'm going to ask you, Ed, to come up and expand on that because you are leading the effort. One of the things we are doing is creating a repository of definitions for clinical decision support technically, so that they can be applied across multiple platforms. Ed comedy want to briefly answer that? -- Ed, do you want to briefly answer that?
I think that's a great question. The first one I heard was are we going to include vendors. The answer is, yes. We haven't launched anything yes but it's in the learning network. Part of my idea is to convene all of the stakeholders, patients included as well as vendors, to answer some of the questions that have been raised. I don't have an answer to whether they will cooperate or not. I think your question around, are we envisioning this as is being built into systems are customized, I think it is both. I think there are different use cases and users of the repository. One could imagine organizations that would want something relatively off-the-shelf although we know this is very much not off-the-shelf.. Something close to that. Others will want something more raw that they can work with. I think both of those are useful.
Victor?
I wanted to address what Mary was saying. This idea taking a case sample or case focus and develop programs around it. We have patients with multiple conditions we need community support and highly developed medical systems this requires quite a bit of integration around knowledge and information that tools such as this come in and support. They need to be properly assigned, coordinator then shared. Rather than figure out what the technology can do, is figure out what we can do for people and in caring for people. And then we can develop a science built around that transformational thinking. This is supported by that approach rather than what technology makes available. An example of this is PR rose -- PROs. They have been around for quite a while and they are have been promises to put them into place. But they don't translate well here because clinicians aren't aware of how much of a change in a particular measure is meaningful. When they are made familiar by some of these displays, they don't know what clinical actions are able to transform or correct that change. Someone was talking about [ Indiscernible - heavy accent ] These basic signs of what clinical activities improve at the clinical level, forget a bout the patient level. But PR rose are -- PROs are essentially Avalos. -- Are essentially difficult to implement. [ Indiscernible - heavy accent ] That think we need to open up a large enough area. [ Indiscernible - low volume ]
David?
We have wrestled with this same issue in looking at our HIT portfolio. -- HIT Portfolio. One of the issues is what even constitutes H IT. Is telephone care HIT because there are a lecture ones involved?
[ Laughter ]
Given the limited budget come of the scope that you have laid out is too big. The phrase that I have heard is there are leaf issues we are focusing on when we should actually be focusing on trunk and branch issues. And then obviously the problem is that the pace of the private sector [ Indiscernible ] is so rapid that to try to keep ahead of it is always a challenge. Trying to think of what things are broad crosscutting issues that don't lend themselves to one solution and are going to be taken up well by what NIH funds in some PROs study -- PR oh study -- PRO study. Right now it appears we have computer centered technology rather than patient centered technology. [ Laughter ] The other thing that could be a game changer but there's more hype than reality right now is the Big Data question. I think there are issues about how Big Data can now either empower patients -- Big Data can now empower patients. Building on patients like me, that type of issue, this would be aimed at patients. Rather than plugging an average data, plug-in data to say that at your age and with your preferences and with your comorbidities, let's find some patients who have had a knee replacement and how happy they are. The last one is the patient reported outcome issue. Whether that becomes H IT -- HIT, the ability of mobile phones so that people can record step rather than when they were doing patient -- pencil and paper. We are interested in being able to capture response to [ Indiscernible ] therapy or severe depression. I think these are issues. Given the scope is too big for your budget I do like the suggestions that Mary made and Victor as well. You could take one test of principal, one condition to say what are the ways in which technology and these components could together create a better model of care as a test case. That would allow you to ask some general questions in a way that would tell a better story. I think you are going to have to. Out a number of the things that have been lumped under HIT in order to make it doable.
I want to return to Victor's point and illustrate it with another example for which there is data. We know that the patient reported outcomes that are very general questions actually have pretty good predictive power in terms of how people will do. What is your state of health? The health outcomes survey which is used in the program for managed-care -- Medicare managed care. --, We got that data in the organization I worked with and didn't know what to do with it. It seems to be important, either as an entrée to a discussion or further analysis for those sets of patients. The action after the measure needs to be supported at the same time otherwise we have all of these measures and don't know what to do.
Just to pick up on that, we have tied some of these things together. There is some research underway as part as the -- part of the laboratory project dealing with pain. This is a nice example of something that is important to patients, and using the pain inventory. The work that they did, as it turned out, they had to do a ton a preliminary work to do a few things. I will lose -- I will use this specific example. We were collecting it but it was showing up on the Electronic Health Record as a PDF attachment and someone had to double click on it to open it. In the rare instance that they double clicked on it to open it, a presented a score that those of us who know psychometrics love and embrace but meant pretty much nothing to the practicing physician. We also talked to patients and what they said was, I am willing to give you this information if there is any evidence of the Doctor actually using it to think about my care. Most of the time I think [ Overlapping speakers ] [ Laughter ] There was a lot of work undertaken to find a way to incorporate the information into the clinical workflow to Victor's point , in a way that presented the information with all of the other clinical information, in a way that helped guide and actually -- [ Pause ] -- Is something like CDS, made some suggestions around options at a physician might talk to a patient about. The work that was required to do that was tremendous. It's the kind of thing, I think, this blocking and tackling work needs to be done in order to understand that the promises just not enough to have the tools in place or even to collect the data, if you don't have a receptor way of integrating it into the flow of care delivery. I think the ongoing challenge for AHRQ , I see this in our system. We have systems within systems. What is the part that can be done that is generally useful? What is a work that has to happen office by office, practice by practice? I am struck by how much local customization is required to make a lot of these things work, because clinical workflows vary so much. I think the key to the success is the integration with clinical workflow. There are a lot of other things such as the translation of BPI core into something that could be -- mean something to the physician and how you could implement that with all of the information they are accustomed to looking at. One more thing, I am drawn to the idea and have also been writing about this, focusing on patients that are medically complex, multiple chronic conditions or however you want to call that out. I think in many ways, their preferences and priorities are really important because we don't honestly from a science base, have the clue -- have a clue what to do for them. I think that is a sweet spot. It is an important issue. It's a place where we can shift the way we think about how to make changes in care with IT as a facilitator, but more thinking of it that way rather than as a bright shiny object we are trying to figure out what to do with. I think that is the key. And of speech.
-- Andy of speech.
If you are thinking -- as you are thinking of other sweet spots, I came from this meeting recently were all of this stuff -- where people were talking about what's going on outside of the health area is David was talking about. Well beyond patient supported outcomes and what health systems think about this, ways in which these resources -- how are we going to make sure that this is part of the whole way that we think of care? This is really about care transformation. I think integration is going to be more than just connecting the dots within the health system. It is going to be what is going on outside of us, making that part of the whole plan of care.
I was going to make the same point. [ Laughter ] This point of integrating all of this without adding more to your plate, to look at the model apps that smart phones are carrying. Everyone has a smart phone, whether you are higher income or lower income. We need to capitalize on the use of these apps and integrate those data into our healthcare data. After all, patients are spending 95% of their time in the community, not in the practices. I think there's a lot of ways to use the data. The validity and reliability needs to be studied, and how to integrate it.
I was what would knowledge the people on the phone. I don't know if Sandy and Kevin are here on the phone and have anything to say. I can't see your tent cards back
This is Sandy -- tent cards.
This is Sandy. I don't have anything to say other than to underscore what Victor said about developing tools to transfer late -- translate patient reported outcomes into actionable actions that providers can take. There is a gap there, I think. AHRQ would be the appropriate organization to fill that gap because it would fill a gap in its own research right now.
Great. Kevin, are you on the phone? Victor?
I don't think anybody would argue that we would be having a program of research around the use of television to promote health. There was a time where that was discussed. Television is a health promoter. It was new and we would -- were wondering what it would do. Today now it's the mobile app etc. We wonder. I think we are be on that first stage of we have to go back to what we do when technology has become embedded in our routines. What is the situation that requires addressing and what are the mold of addressing this particular situation -- modes of addressing this particular situation. When this happens you lose a little bit of the focus on recognition but then you can folks -- focus on what really matters. What really matters is the quality of healthcare. I think maybe we are getting to that point where we need to go back to, what is the situation where addressing and what do we have to address this situation.
I also wanted to add up on the theme that's going around. The idea of interoperability and how we are designing these records, how much of this data is not when you fit into the traditional definition of electronic records. It is sitting now in these apps. Those outcomes that we are trying to measure, I think, we won't be able to do a lot of those unless we go back to your point of how this connects and what the interfaces are. I don't see this in the agenda. Last week I learned about an out -- app where behavioral people are tracking their own diaries within a group environment, none of that hitting their electronic record. There outcomes are much better than anything we are tracking within the traditional view of the electronic record. Again, making the point that the definition of interoperability -- are we beginning to think beyond that traditional record and how are these interfaces going to come back to measure the outcomes?
[ Indiscernible - speaker too far from microphone ] Clearly that whole waterfront is something that we were thinking about. I very much like the idea of figuring out what you are trying to accomplish with the health IT and how you make it usable for clinicians. I am thinking of the example of mobility. Can you run to the corner? Is it your hip or diabetic neuropathy? If it could be done right, I think we need the technology to make it easy to do but we also need a real filter change at the same time as far as how patients' outcomes are made. We need to focus on the infrastructure needed to do this easily and in a way that's meaningful for patients and providers. What part of it is how you actually get this into practice to impact health outcomes?
One way to think about it is what is different now than our base case. What is different is we can collect data much more easily than we used to be able to, through mobile apps, or something hooked up to your iPhone. The second thing is we can feed data back much more easily to the patient, to shape behavior, or to the provider. The third thing is we can aggregate data in a way that we never used to be able to, to find insights, to find 1000 patients that look more like this patient. We can think about how those three things together could help to improve on care, if we use something such as chronic disease. I think that behavioral health is an interesting one. There are so many apps. We are not going to evaluate them together. One model is the marketplace produces them in the consumer decides what they like. I think there is a place for figuring out what are the functionalities of an effective app. What about being able to feed that information real-time to a patient that makes a difference in terms of motivating behavior change or medication adherence. I think they are generalizable questions. You could build 1 million apps on top of that. The marketplaces it really interested in testing the effectiveness of the apps. It's effective to them if they can sell it to people and people like it work there probably are some fundamental ways to improve come in terms of changing behavior.
I want to make sure we have time for public comment. I know we have Adam hear from Academy health. And [ Indiscernible - low volume ] Is here as well. Do you want to make comment at this time?
Thank you. Good morning everyone. I am from Academy health. I am a grateful recipient of training friends from AHRQ . This does seem like a long time ago. I wanted to comment and bring a couple of threads together, partially based on my role as an investigator for the last couple of years. Largely, going back to the beginning of the morning where you talked about the core value proposition for AHRQ , one thing I don't hear about much in my work is AHRQ needs [ Indiscernible - low volume ] We talk a lot about the US healthcare system as a whole. I was fascinated by the earlier discussion. I don't think we have a great understanding of what this means. Especially as there are a lot of efforts to try to integrate information across behavioral health etc., the notion of what is the most effective way to address these questions. Apps will enter into this. What is the technology aspect of this system? I think there's a common interoperability. We don't understand, especially one of the layers of interoperability considered process interoperability. I won't go into the technical definition. But we don't really talk about processes, how the end-user makes the most effective use of technology and how these systems are woven together. Thank you very much. The final comment I would like to make is I think there's a lot of value that we can get from learning cooperatives collaborating together. This can be an inefficient investment. I'm a big supporter of this. Thank you.
Any further comments Arlene?
Just that this is great feedback and a lot to think about. Over the next couple of months, hopefully we will be identifying the areas that we want to target for next year.
I just wanted to talk briefly about interoperability. First I will do this as a regular person and then as a statistician. [ Laughter ] I have electronic health records with a retinal specialist. I have electronic health read it -- record with my cataract surgeon. I have Electronic Health Record with my surgeon who works -- my orthopedic surgeon. I also have an Electronic Health Record with my primary care physician. I am very happy with the services with each of those people I think they are happy with the system working with me but there is no sharing of information. Right now at the National Center for Health Statistics slowest thing we have is the data that is coming from healthcare. Health interview survey, vital statistics, its light years have to do this. We have no standards. You are talking about vendors. We don't even have standards within vendors of how they do business with their hospitals. I commend to you, anything that you can do from an interoperability perspective of patients, is I think, vitally important. As a statistician trying to measure what is going wrong from healthcare perspective it's also very important. Thank you. -- From a healthcare perspective, it is also very important. Thank you.
We now have a break for lunch. A reminder to the retiring members, get your picture taken with Rick before heading over to the café. Everybody else can go to the cafeteria which is located on this floor. Your lunches back here so that we can reconvene I talked at 15. -- Reconvene by 12:15.
[ The meeting is on a lunch break. The session will reconvene at 12:15 EST. Captioner on standby. ]
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Thank you everyone for coming back. I am going to turn over to Rick to the to the introduction.
I am delighted to introduce Joel who is the director of the -- as of a month ago the Center for financing access and cost trends. His an economist and researcher and has been doing work on a very long time. In leading a strong grip of researchers at the agency and I am delighted to have Joel as the director. And some of the work that has been done with them.
Thank you I'm very happy to be here. So far the first month has gone very well. Except for the move which is a little bit of something that we have to deal with. For your lunchtime pleasure we have a session on real-world uses in the medical expenditure panel survey and we have a terrific panel of researchers who have a lot of experience using AHRQ as well as doing policy research in general on my right is Jessica Banton who is deputy assistant director at the budget office and she directs the development and use of the CBO health insurance simulation model. All of those numbers that you see on the news and from Congress on the effects of the affordable air -- care acts come from Jessica. You can think of for that. She also has unique experience because she was previously the director and the division of modeling and simulation in our center. She was there for 20 years. I think with her experience with MEPS in the policy experience at sea. She provides a unique perspective for the session. On her right is Chapin who is a senior policy researcher at the RAND Corporation. He has a lot of experience doing policy research. Prior to being at RAND give is that CBO as well and at the Center for health exchange. He has been looking at the impact of policy changes on the health care system. Recently he's been looking at alternative payment systems and notably he has done some work with AHRQ staff looking up payment for inpatient hospital services under public programs compared to private payers and that uses MEPS data and he is co-author of the paper. Rick is also a co-author. On his right is Jenny Kenny who is the codirector of the health policy Center at the urban Institute which is a place that I am very fond of something got my start in health services research at the urban Institute. Jenny is a nationally recognized expert on Medicaid and Chip program and broader issues facing low income children and families and she has worked with the urban Institute's micro simulation model and has done work looking at Medicaid and chip issues and has published a number of papers with our staff one of which is a question last issue of health affairs looking at the CHIP program and had some impact on policy as well. Again I think Oliver panel members have a great perspective to talk about the uses of MEPS. I would like to start out with a little overview of MEPS in general and how it is used . Just to describe the survey a little bit I won't go into great detail because I think you are all pretty familiar with it but generally MEPS is not one survey it's a family of service. There's three major components. There's a household component and medical provider component and an insurance component. The household component is a survey of the US institutionalized population and we get the sample from a subsample of surveys which is done in the previous year. We follow people over a two-year period so that we have a longitudinal component to the survey -- so we selected new panel each year and follow them for two years. The medical provider component is not a stand-alone survey. It is really a supplement to the household survey. The idea there is to collect information that households are not very good at reporting. The thing they are not good at performing -- reporting at is the total that was paid for medical care. For example if a person is covered under Medicaid when I go to the doctor they handed me a card and if you ask them what they paid for the bit -- visit the tell you nothing. That's not true. Something was paid they just did not pay. And order to get that information we actually get a permission form from the respondent and then we contacted provider to get information from the provider that was paid for that care. That allows us to get much more accurate information on what was paid and by whom for any medical care that was used. The insurance component is a whole separate survey that is done by the Census Bureau and it's an establishment survey and basically as you are all aware most people in the United States get their health insurance through employers. Most people are covered by employer-sponsored insurance. The purpose of this survey is to go to employers and see what they are offering and what they have available and what the cost is and what to their employees and how many people are enrolled. This is the one component of the medical expenditure panel survey that -- it is designed to make state estimates of employer-sponsored insurance. Just to give you a brief overview of the kinds of things that MEPS is used for. In addition to overseeing the fielding and implementation and design of the survey one of our main functions of the in the center was to provide technical assistance to policymakers. We do a fair amount of work for Congress and the administration but typically it's working with the congressman or senator's themselves or organizations that inform them like the discussion office. Because we are more familiar with the survey we have a stable of researchers and we are in a good position to provide -- it's much more efficient and much faster if the call as an we usually have data available for a file available and we can respond to the much more quickly than we try to do the work themselves. Just an example here is the chip reauthorization and we did a fair amount of work and I think Jenny will talk about some of this in a minute. There were some proposals to premiums to chip recipients and a question as to whether to reauthorize the program are not and urban used maps data to examine the impacts of those changes and those were used by Mac pack which was Medicaid and chip payment and access commission to inform Congress about the impact of those would be and they decided not to charge premiums to loan can kids -- low income kids even other marketplaces were available now. We also do support for the administrations of this was back when they were designing the affordable care act. They do some work with health performed providing them with information and this is what they put up on the website. Basically the analysis and also in terms of implementation of policy and the affordable care act implemented a set of tax credits and they started in 2010 so that small businesses that would offer so that employees would get a credit for that. Actually we worked with [Indiscernible] and he was involved in this and in determining the tax credits it was limited by the average cost for small employers in each state to go the only two -- data to look at and each state and we actually use that come up at the tables that they used in the tax credit. We are still providing that every year. In terms of the policy and FDA drug policies -- they were looking at a paper looking at stimulant medication use and adolescents and he is MEPS data over a number of years. They were trying to decide whether to provide a black box warning because there was some concern that this trajectory was increasing the use and Sam basically showed that it leveled off. So that the increases with double off. And I decided not to issue the morning --'s warning. When Arkansas was considering the medical -- expansion did not want to just expand the Medicaid program but they would put individuals who would be eligible for the Medicaid expansion onto the marketplace. However some of the beneficiaries would be considered frail. They wanted to put them in regular Medicaid program rather than put them into marketplaces because there were services they did not get into the private plan. They did not know how to sort this out or divert people that would be considered to be frail they actually called us because they had no data yet. Until you actually have people coming in any collect information about what the health status is you don't know what will happen. We use data to analyze it would be likely to be frail to find has been in a high-cost person and we developed an algorithm that they used in that program. In terms of consumer information this is something that consumers checkbook does every year. They started out and did some runs for them to profile different types of families and individuals with their medical expenses would be and they would run them through the federal health insurance programs to see what the cost of the individuals would be depending on what your health profile looked like. That is still used and he does the rent himself but it still uses MEPS data. And just to leave you with some accolades that we have gone from outside of our own organization the American Association provide the policy impact award -- they don't get it out every year but in recognition of their extraordinary effort in contributing research that has informed policy divisions -- decisions I think is still applicable today. With that I will turn it over to Jessica to tell you about the data.
Good afternoon. I am happy to be here today. I'm always happy to talk about the data and how valuable they are. And having worked with them directly from his 20 years myself and now I use them extensively in the modeling. I'm going to tell you a little bit about the micro simulation model and how critical to components of the data are. There are many applications of the MEPS data but I will focus on just this one today. We have a model called HISM health insurance simulation model. -- He actually helped us. It was just a research model involved in looking at proposals to expand coverage. The model was expanded in 2008 and 2010 to estimate additional proposals including of course the estimates of the affordable care act. CBO was involved in modeling the cost and coverage implications of the ACA. A lot in 2008 and 2009 as it was developed over time. The model is now updated regularly once or twice a year in terms of major updates to incorporate new data more recent economic forecast changes in law or regulations that have happened since the ACA with past and technical improvements. Baseline estimates are published and they are used for scoring changes in proposals that would alter health care system to be under 65. The base data are from this SAP because it's larger. We use the MEPS household component because it to determine expenditures. We send from the MEPS to the SIP echo we use the survey to benchmark or private insurance premiums circa --. In addition to benchmark or spending data to national health accounts and use that for projecting spending and we use national compensation survey which is collected by BLS for grouping workers into synthetic firms. We use other data to echo this is the primary data sources. What does this model accomplished. We use it extensively to model affect on the federal budget changes in outlays and revenues and also the net effect -- we do a 10 year projection we start with the current year and project 10 years out. I've provided in 2016 the next baseline will be published in January it will include projections for that fiscal year and tenure projections from 2017 to 2026. In other simulation models do not project like we have to. But that's what we are required to do so that Congress can get an idea of tenure cost or savings due to any proposal. We also estimate changes in coverage by source of coverage changes in the uninsured changes in employment-based coverage and outflows and Medicaid and exchange or marketplace subsidized and subsidized -- we use it for occasional studies that prove Pam's -- premiums and outcomes by poverty level. So why do we use MEPS data. So by stimulating behavior and family unit and distribution of responses rather than the average a spot by SL or a subgroup that would be the case in some simpler spreadsheet type I. -- Model. By taking advantage of the information click it and household surveys like SIP or MEPS or CPS on individuals and families on key variables including income and health data and employment data. That's very important. Our estimates better reflect the outcomes under various new policies. By using micro data the estimates are also able to capture any nonlinear relationships that we believe exists. So this is the advantage of micro simulation versus other types of simulation it is something that our clients on the health care about the care about outcomes by poverty status by health status and certainly by employment status. And how these things change over time in terms of various policy impacts. In order to support a micro simulation model we need micro data. So this is where the MEPS comes in. Because it is so rich even though we are not using it as our base data we use a lot. The household component in particular is very valuable because of the individual level spending data that is collected. It's collected of course across insurance coverage types. As you know it's the source of information on the uninsured but it's measured and that measure will be consistent with the data collected on the privately insured and the Medicaid in some cases you get more detail from the maps -- MEPS the need you from the claims data. For example there are no claims data for managed -- Medicaid managed care. There are all these self-reported other variables age, gender, family structure, health status, and various measures of health and chronic conditions and physical limitations and scores and at -- economic characteristics like employment data. Can use those variables we can include the MEPS spending which is something we are considering moving to. We are getting a very accurate imputation that we have conference was. Then because the MEPS are reconciled with health expenditures every five years or so we can adjust the spending data and we can adjust it to better match health account spending data. Of course we have to get it right and close. We do a whole bunch of other things. We benchmark the income to tax data and there are various methods. We get household income and [Indiscernible]. Then finally the insurance component data is really critical as well. Relative to any other survey we get -- it's a much larger sample by like a factor of 10 or more of establishments and any other business survey got a much higher response rate than any other survey by far. It is on the order of 75 to 80%. Most business survey and I have to look at a lot of them -- we hear about the Mercer survey and other business surveys. Those are useful but if you look closely you will see the response rate is under half or a third you are getting a biased response. -- We strongly preferred the MEPS in terms of the distribution of premiums offered by employers. It also has a better representation of small establishments. It also includes a sample by the IRS that no one else can take advantage of. Sometimes the other business survey gets it wrong in terms of what small businesses are doing and offering. Also because of the list sample weekend a better representation of newly started businesses. This is one of the problems of small businesses. If you have a stale list you will get a biased response that is based on firm set up in in business longer. You won't get the new startups.
Just because of all the things you would get a much wider range of premiums that are offered. That is very important for capturing the distribution. In closing I just want to say the accuracy of the model and projections that we provide -- thank you.
Good afternoon. Thanks for having me here today. I really appreciate the chance to profess my love for MEPS. [laughter] you don't get a chance to do this every day and there will be some genuine feeling coming out. I'm a health policy researcher at the RAND Corporation studying health system change for several years and before that at CBO. Before that I would describe my personal experiences with MEPS. I won't pretend this is comprehensive in any way. The first side is a figure for a paper I did when I was in grad school with Allen and David with the other off -- authors on this paper and the dotted line is showing sending per-person for individuals ages 75 or older relative to individuals between 35 and 44 years old. This was a very simple concept for a paper. We just wanted to look at trends and spending by age. The MEPS was absolutely critical to this. We could not have done it without the MEPS. I don't know -- it goes back to 1963 this was the predecessor survey before the MEPS. There are interesting things about this paper. One is it was just so simple. Click on the scholar and look at my citation counts this paper is the most citations of everything I have done. What that tells me is that the policymaking and research community are desperate for basic facts about the landscape for healthcare and population and spending in this country. You don't have to do anything to provide this service to the policymaking community. The other thing that is striking to me about this paper is that you will see like a mountain where you go up to 1987 and then you over the top of the mountain I have spent the rest of my career trying to figure out why we went up and over the mountain. The CMS office has done analyses similar to these also using the MEPS and I started using it regularly. This has become an internation -- information research and respond more questions that I found fabulous. Coming that forward in time and talk about some of the more recent uses. Jessica did a much more thorough job of modeling that I could but I would like to expand on that point about how important it is and say now at RAND we have a computer model -- MEPS is also critical to the setup of the computer model and these models and the results that they produced provided guidance throughout the development. The writing and debate over the ACA and different ways to implement it. Some of the studies done with the computer model were cited in the deeper Supreme Court decision. The findings of these models are playing a big role in policymaking going forward. I don't want to pretend that the ACA with Panama MEPS or the modeling but the fact that Corporal policy could forecast with some accuracy and it certainly allowed the policymaking to proceed. The other point I was mad is whether you love the ACA and with the repeal of the place -- any replacement for the ACA is being assessed using the same model. RAND is putting out a study on the upper hatch up to and patient care act it was based on the same MEPS data and to say that ACA was -- if it could be used going forward. Moving forward again the MEPS is critical to a couple projects I am involved in today we are right in the middle of. One is RAND is sending up -- setting up a new simulation model focused on provider payment and how they are paid and thinking through how physicians and hospitals respond to different payment arrangements. The MEPS data are one of the key data resources feeding into that model goes into individual's health care utilization profiles but we have also relied on the MEPS to give us a sense of trends in the prevalence of capitation for physician services. MEPS is really the only possible source of information that I am aware of the Iraqi input into that model. Joe mentioned the analysis that I have been lucky enough to be involved in with public versus private rates for patient care and hospital that's an important issue and it's hard to get your hands on the right data to compare what insurance is paying relative to what Medicare -- the medical combine -- provider component -- first let me point out there are more and more data research -- that can be drawn from. And think about the claims database the market scan that has been around for a while the blue health intelligence IMS more and more states are coming up with claims databases -- the MEPS is still the backbone of so much work going forward. Because MEPS is different than all of those new sources of data so it includes Medicare as well as the privately insured. If you want to compare the uninsured with the privately insured you can go to market scan and do that. You can come back to 1996 and the comparisons over time. They can be extremely viable for certain analyses. The other point which the other folks have not hit on and it may be more present -- present in my mind because of the researcher who lives by grandson every project that I do and the fact that the MEPS is three is a godsend -- is free is a godsend. Not just the dollar M. It's that if you have to pay for data have to negotiate with the funder under the purchase order and all of that saps energy from research. The other thing that a special is that there's no protected health information. There's no personally identifiable information and that lets me and any studies using the MEPS we just sail through and it makes our lives easier. The other is the documentation on the website is fantastic and if you just pick it up until your current students to go pick up the MEPS. None of the other data sources I've described come anywhere close to that. The last thing that I have pointed out is the integration of the household component and medical provider component. The more linkages they are the more you can compare insurance data with family structure with self supported service with spending the more linkages there are the richer the possibilities are. So that is my love song [laughter] the last thing I would say is a filmic successful societies make the policy decisions by just testing priorities and talking about trade-offs. And the MEPS is a piece of that policymaking process in our country and the alternative is making policy by trial and error or rules of them and we are doing better as a society the more that we can make our policy choices using the best information available. Thank you.
I would not be expected to be uplifted so high. That was beautiful. I am going to ad-lib something to. I have been thinking about -- MEPS is a complicated umbrella or family of service. Why is it that so many of us do use it. I would like to put another one in the mix that is actively engaged in using as well and the involving policy environment and that means that the data to a good job of meeting our needs and as researchers entry costs are so much lower than they would be but that is not the case. I will be sharing examples from the urban Institute that use the data I think this was a fun assignment. When I looked at our catalog had so many to choose from I really had to kind of window it down because I knew you did not have hours and hours. As with CBO and demand I would submit any micro simulation met -- MEPS data are interlocal -- injured go -- intake role. I will share some results that make you see that in that way but it is also central to our research on uncompensated care and cost of dependent coverage and out-of-pocket spending in healthcare paid sick leave prescription drug spending among the many other areas. I will use the Royal we went talking about research done by urban Institute colleagues. The first attempt to answer the question low income looked more like the insurance distribution of higher income adults. This particular paper the affordable care act was expected to improve coverage among lower income adults and we examine the likely impact on spending when looking at what would happen if these low income insured adults went to having Medicaid coverage. Because the MEPS has this information on health status we were able to look at health problems. Two groups of particular in Paris -- interest would think event coverage case. Not surprisingly but importantly we were able to kind of quantifying the major under spending among uninsured and chronic health care problems particularly in terms of inpatient care and prescription drug use in a saw the much heavier burden in terms for the uninsured go compared to those with full-year Medicaid coverage. Likewise we use it to assess potential changes and recommended preventive care and I think we all know that the affordable care act has major emphasis on preventive care and they had very rich information about care receipts and it is set up in such a way that you can link it to the recommended screening intervals over time. We looked at eight different outcomes and in this case we focused on high versus low income adults and estimated models for control for all the observed differences between us two groups and ask the question if the insurance distribution of the lower income adult look like the distribution of the higher income adults how much of the And every services and the gap between high and low income in terms of receipt of care. Our analysis suggested that the differences between high and low income adults in receipt of these different provision of services with narrow -- will do narrow and that the distribution could account for between 25 and 40% of the differential. Not surprisingly that the differences would not go away and other factors especially education and health status differentials between the low and high income groups would have to be addressed as well if we would really see that preventive care receipt levels among our low income population reach the higher levels for adults. I will also point out that even for the higher income adults the rates fall far short of what's recommended and actives is an opportunity at to track how we are doing. As you have heard the MEPS is a critical source of information payment for care. That's really a unique and important source of information that we Of law and our work in this example we were zeroing in on the question of how much spending in a typical year would receive for the full year uninsured how does that compare particularly for the full-year insurance. And what are the sources of payment. 2013 and this is an analysis that if you look over time urban Institute researchers have been doing for more than the last decade probably going back to the late 80s. What you see is much lower full-year spending over the course of the year and for the full-year insured. Importantly when he skill that up you find that spending by the uninsured translates into about 85 -- 85 billion and uncompensated care dollars. 21 of the spending was out-of-pocket by the uninsured and then there's a sliver that is direct payment probably retroactive Medicaid coverage for the uninsured that ultimately gave Medicaid coverage and the information that we have that comes from them figured large and analysis that we figured on that case that they alluded to. The analysis -- the MEPS information on spending and sources of payment were actually critical for work that we did to try to project with the potential consequences would be for a finding with the plaintiff in the court case that challenge the legality of states that will on the federal government for the marketplace. We used a micro simulation model to estimate the impact of withdrawing the subsidies on coverage and if you have heard it plays a role as an underpinning for that but specifically in this analysis we wanted to address the question of how much would healthcare spending drop in aggregate and what would be the additional impact across sectors. Our analysis suggested that the total drop in healthcare spending would be about $9 billion overall the particularly heavy hit to the hospital sector. So as Chapin said the work that ran at the Institute to get used in a number of the briefs that were submitted on behalf of the folks who were weighing in on this decision and ultimately recited in the decision itself finally I want to close with another example of urban Institute research that was done in collaboration with colleagues at Park and it made use for the policy debate and as troll indicated this past year around the continuation of the children's health insurance program and federal funding was due to expire in September 2015 in the primary question is what would happen to kids enrolled in separate programs around the country. If they were to cease to exist. I think in the back of many people's minds there was a preconceived notion that the marketplaces and the subsidized coverage would make CHIP obsolete. With some great colleagues at arc mentioned here on the side researchers collaborated to use the ICJ that the first document on the ground what are the costs of on coverage employees coverage and family coverage facing families around the country. So you guys probably know that the firewall is a factor that determines whether you are eligible for marketplace subsidies is all based on a current interpretation on the cost of family coverage and as we know so the data was used and because of the sample size and because of the representativeness of it we were able to put together joint distributions and employee policies. The analysis that we did that but Tom from arc and not surprisingly -- maybe it is surprising. We found that most employees if not all that have access to coverage that could cover dependents. We documented the tremendous variation in what it would cost to add one or more children to that plan if you look at the second bullet there and the cost for the folks in the top desk I'll would be facing and you could see that folks in that particular band would have to pay over $7000 and if they wanted to add them to the employer-sponsored policy or close to $12,000 to add two or more children and an analysis that we did that Bill Thomas we zeroed in on the families who found themselves -- would find themselves and no longer having separate CHIP coverage for the kids but not be ineligible because of employer plan that was deemed affordable and 9% of the federal policy level and what this demonstrates is with the cost facing families we project losing separate coverage with the employer-sponsored coverage premiums would be to add children to those policies. It's really a nominal cost. $125 to add children. You look for the third quartile and the fourth quartile and he can see that the premiums are quite large constituting 21% of income while above what the affordable care act has established as affordable and has the consequences for work that we did we estimated that over 1 million kids with these coverage with what AHRQ researchers have done the recommended to extend CHIP.
We have a few minutes for any questions people have for the panelists.
This is an enjoyable panel to listen to. I came in with a high opinion of MEPS and a potential he is so I think there are other reasons the MEPS has been a success for so long . They are stable highly competent staff is behind and it's been a real plus. The main question is what do you want from us. Are there big decisions and what of the strategic issues that perhaps this panel has an introduction to.
Good question. I mostly try to use these meetings to get input from the national advisory Council. To get input on where we are on November 3 in the goings-on -- and I wanted to use this meeting for advertisement unlike -- most of what we do have this was not so much a request for inputs although I would be happy -- the one part that I would be interested -- there's a couple things. One is we are trying to figure out how to have the data be even more usable and these love songs -- the data is widely used by a set of researchers but we always working on how to make it more usable with folks suggesting ideas and that would be very useful. We're trying to increase the accuracy fee for the gold standard but there's always work to do. Finally there's a much broader -- talked about the emerging sources on spending and as we think about the longer-term future -- that was the only game in town there is some CMS data but not so much. Medicaid data are beginning to be usable and should be thinking about and what some can do. --
One thing I want to bring up is to some example you have thought about researchers and some selected policymakers particularly in Congress and I think it is right that the HR key staff has stomach crunching for them rather than hand it to them but to 10:00 -- what extent have you thought about it with software create tables thinking of journalists thinking of people who work for advocacy organizations and making them easier to use tool for them and it continues to get it out there for data on medical spending.
I think that is a great point. We tragedy that and there is a net as well. It's unfortunately kind of clunky and hard to use. I've set the tables that we put up which are customizable suite to do something there. Think we do a better job of disseminating that and we need to make the tools that we have more user-friendly. I think to the extent we can do that kind of thing we would like to. Redesigning websites and stuff gets into a lot of different kinds of issues and to try to develop some kind of system but to the extent we can use what's already there and try to make it easier and user-friendly. If the tables that we put up a customizable and make it calls for reporters were looking for something and I say if you go to the table you can then customize it. They can't follow through to do that. It's not easy enough for them to do and that is something that we want to focus on.
I love it as well. MEPS to me I think is incredibly easy to use. It's a wonderful tool with students undergrads and med students etc. Maybe they are one term of the figuring things out in education it's been phenomenal and having students go in there and explore. I moved on to using more data sources which are obviously developing but me -- need a lot more work. One of the things that MEPS decimated a real in-depth look and I know it's real cost prohibitive every year to seek have is how much consumers are paying at a target. When you ask them they probably underestimate. I don't know where to get the funds will have to take deeper brick to be done perhaps every five years but I think that's a very deep aspect is that really dig into what our consumer spending out of pocket and on wet and that's a big gap. I love it and I think it's phenomenal that's one aspect where the kid is unique from some of the other data sources that have evolved to the last 20 years.
We collect out-of-pocket spending and we have the medical provider component so we know what providers say they are getting from individuals so we have that.
Something that was done in the late 90s there was a lot of in-depth investigation into that.
We often linkages to claim state of Connecticut was more of an underreporting analysis.
There was investigations going into people's sons and looking at document as opposed to just asking them by looking at document the medical bills and the like she would get the statement from your ensure that says you paid this year and transfer this.
We try to do that. We send people in the lead up to the server send them information about what's coming and we asked them to keep the center records. People do get information -- we have some logical as -- explorations. The out-of-pocket is probably the things that they are best able to report.
They will not run a over-the-counter --
Over-the-counter we don't get. That's true. There are certain -- if you go to the consumer expenditure survey will be create -- collecting a lot more information. The things that are not included selected difficult thing to try to collect. It's hard to get people to keep those kinds of records and they might have it waddle of aspirin.
Think you may be getting a sense of what type of plan the health but getting into the deck tables and co-pays and it was a while ago that we were looking at the information.
In the survey we had a health insurance plan service where for the individuals that were in the Mets household survey we went to their employers and collected information about those plans and there was a link status of their. In 96 will -- we explored doing that for a few years. The response rates are so low that we do not do that. It's something that we can think about doing and if we can figure out a way to link to the employer data but that's difficult because the Census Bureau does the employer survey and then you have always confidentiality rules so it's difficult to make those kinds of linkages. We used to do that survey and it would be extremely valuable for the makers -- micro simulation model as well if you can actually get the specific benefits of the plans with the individuals held so that the good point.
This morning over and over and -- a number of car -- this morning there were a number of comment about -- about taking the dry article and turning it into a personal story about the families and what would happen to them and it could be a little story. Nothing -- a little story kind of thing. It would be a way to communicate what would happen as well as the implicit notion of the value. Think that's a terrific idea and I see our office of communications director in the back and I think we need to get together and talk about doing something like that. There was some kind of commission about 15 years ago that was set up and we were talking to them and they put out some stuff for widgets and profiles of what spending is for different kinds of people and I try to do that kind of thing. I think that's an excellent idea with all the changes and it's a way that people could understand what is going on and humanize it a lot.
I feel [Indiscernible] and successfully so. We were hearing before the AHRQ is a source of intelligence about healthcare this just demonstrates that particularly effectively. They don't react to data. You provide -- would you mind commenting briefly about how would you describe -- and people respond to data. It's kind of a revenge of the nerds moment. [laughter]
I would say that people are heterogeneous. People respond to stories and some respond to data. This is what I've done for 40 years the people of the agency are involved in doing. That's true whether we're talking about public policymaking or policymaking in a physician's office or health system. We are about bringing evidence to getting better decisions made them a lot of the conversation this morning was how do we generate support for the agency among people who are making decisions about our budget and they are trying to show what we have done is important and as part of that showing sometimes telling stories about individuals.
Just to clarify my question. I think just to make the point -- resignation reject the notion that people don't need data. But people say it casually. I think we should just reject that. The data has to repackage oftentimes in the form of stories that go once you get the point that is conveyed by the story having the data back it up puts you in a different league altogether than those who just tell stories. We should reject the notion to stories during the day. The undermines the role.
Last word.
I think the story is a -- extremely important. One of the comment that was made in response rates for a variety of surveys in the private sector is not great. When we are doing federal surveys one of the major problems that we have is to make sure that our response rate is into things. This is their opportunity to make their statement relative to healthcare. This is extremely important to get the response rates we need. In an examination survey where we are taking the BBB two days of their time -- where we are taking maybe today's other time and probing them physically and mentally you really have to be convinced and make a difference. So I think the storyline is important to go once you collect that information but don't remember where we got the data and I think it's important for AHRQ to have their moniker on these outputs so that subliminally the policymaker in Congress is looking at something that they will see it. It's really easy to cross out the data program. Once it is crossed out it's awfully difficult to put it back in. I really commend you for doing this and the other is that there's an activity right now when I align the data it's extremely important.
Thank you to all of you. That was terrific. And we appreciate your fine work.
I am shifting to our final agenda item. I will try to give a bit of context while we are switching sides out. We would talk about a report released by the Institute of medicine and on improving diagnosis and healthcare it want to a justice but to try to give you the broad context -- for the will run report. I think we agreed the part of the reason I was going to do this is because the report really touches on all sorts -- our fingerprints could be all over this. If there is time I think one of the interesting points of discussion could be. So -- the report is considered to be in the quality chasm series -- the historical tentacle is there from the 1999 report it made much mention of diagnostic error -- the committee had 20 errors it was one of the best committees of ever served on an multidisciplinary group it worked extremely well in the production of the report. This is becoming extremely common -- it was initiated from a -- a lot of folks came forward to provide the funding for the work. The IOM reports work off of the charge and this is the essence of the study charge I think it was important that it was set in the context of quality of care challenge that was broader than just looking at it from an errors perspective. The kiddie -- the committee was asked to look at it and current efforts to address the problems and to propose solutions in a variety of different areas and he can see a sort of across-the-board in the seams of the report and some of the you overarching conclusions are that diagnostic errors are significant and under appreciated healthcare quality and people just are not aware that this is an issue unless they have experienced something themselves. They also really think -- they spend a lot of time thinking about the role of patients that are affected by the failure to make an accurate and timely diagnosis. They also saw it as being central to the solution. As I go back to the very famous quote who said if you listen to your option he will tell you what his diagnosis is or what was wrong. One of the things that we uncovered that we are seeing across in healthcare is that there is not enough time for the conversations that are actually a critical component to getting the diagnosis right and actually figuring out where to go from there. This leads to the third point of the cooperative effort with the healthcare system and professionals within healthcare but also between patients and their families and the healthcare system. I'm -- not surprisingly, in order to do this work we had to come up with the number of definitions that were in this literature and for a variety of reasons I will not go into we will not -- we spent a lot of time on this. This is the definition of the committee arrived at which is the diagnostic errors are a failure to establish an accurate and timely explanation of health problems or to communicate the explanation to the patient. We tried to write a definition that was from the perspective of the patient and we use the term health problem rather than diagnosis to indicate that this is more than just labeling the disease. It can include risk factors as well as specific diagnoses and it can include -- the problem cannot be so much a clinical diagnosis -- diagnosis as it is a product -- quality-of-life. The emphasis on communication was hotly debated with the reviewers of the report that we really felt that the -- if the explanation wasn't given to the patient that it was a failure. The indicate that these take different approaches to measurement and solutions without they were critically important. The committee did a report on the conceptual framework and we think part of the reason was to really how complex -- underscorehow it is. It starts with the patient experience in the health problem and you can see there's a little slight break which means it's not necessarily the case that everybody that experience is a problem gets connected to the healthcare system. Want to go in this process is meant to illustrate that is very iterative. There's gathering that goes on the information is interpreted and links to a working diagnosis a few times before you come up with something that you have really enough information to make a decision and in the middle there are kind of the rules of the clinical history and examination with the physical exam and diagnostic testing and referral Senate there are a lot of different things that come to bear. At some point the diagnosis is communicated to the patient and subsequently treatment -- sometimes it becomes a part of how you test. It is all very iterative. Take the other really important part of this conceptual framework is in this square that is now around the diagnostic process and all of this happens within the context of the system. It is critically important that the committee didn't say this is about individuals. It's about people working in systems whether they are organizer recognized or not. Everyone is working on a system and the way that things get done and are organized -- the physical and firemen -- environment and external environment all come to bear. They all need to be a part of the solution. One of the things -- I think we went into this thinking we will be able to do it is to produce the famous to air is human estimate in the numbers. I love the committee as a subgroup and came to the conclusion that we cannot derive an estimate. I will talk in a minute about why that was. As we looked at the evidence and we developed this can -- concluding statement which is that it's likely that most of us will experience diagnostic error in our lifetime. Sometimes with devastating consequences. As we looked at the best -- put some pieces it was quite significant to us even though we could not put a number on it. This is one critical area for future research. There are substantial gaps in the evidence and information that we have even from excellent research that is being done. We have information from autopsies, both generally and in the ICU, we have choppers and chart reviews that find adverse events. We have surveys that ask people if they or someone they know has visit -- has experienced an error, there is malpractice claims data, other kinds of charity studies that have been done using trigger tools, and basically I characterize this as a jigsaw puzzle that lets us see that there is a problem out there but we cannot put the pieces together. Part of the reason is that most of the reliable information on these estimates comes from autopsies and medical record reviews and malpractice claims what all these things have in common is that an adverse event happens. It's a very serious diagnosis that seems that it is late in the process. Those adverse events trigger some sort of a review and that comes to the conclusion that in some of those cases a diagnostic area -- error was significant and could be the primary factor. We do not know how representative they are. Ideally in my measurement underworld -- wonder world we would have a measure of diagnostic opportunities that occur over some period of time. We know what portion of those delivered an accurate and timely diagnosis and we know what portion of those delivered a communication to the patient. We don't have any of those pieces. That is why the committee concluded that we cannot put a specific number on the problem and we had enough of the jigsaw puzzle to say that it was pretty serious. One in 20 patients each year experiencing a diagnostic error brings us chart review work that has been done over the 80 year -- over the 80 year life -- lifespan and author against you escaping -- Esperance in -- experiencing at yourselves. There is work to be done the committee concluded that a sole focus on reducing diagnostic errors will not change. That's why they title is improving diagnosis. It's really about improving the whole process. The community -- the committee organized the recommendation around a fold and I will cruise for through them very quickly. I highlighted the one cigarette because I was going to focus on those initially but we decided he needed everything. Here we go and we forgot to undo the red. The first goal is more effective teamwork and a diagnostic process. I will just say that this really highlights in the first recommendation the importance of interprofessional collaboration. There is almost nothing to talk about in healthcare today where we don't emphasize the need for teamwork but this is an area where we see as critically important and I think the report in particular lists the critical role of radiologists. In some of the other healthcare professionals that provide critical pieces of information to making a diagnosis playing and related talk about the fact that the role is largely -- has changed over time. They are arriving at an accurate diagnosis. Also call out the role of patients as partners in creating environments where patients can be active participants. That includes being able to see their electronic health records and all the clinical notes and diagnostic Tech -- testing. This is a complex process as the framework laid out and we sort of need all eyes and hands on deck. Not surprisingly we talk about the role of training and the importance of enhancing professional training and this calls out some of the specific areas. It is something we spent quite a bit of time on. Teamwork and communication. When you look at what it means to practice good care in this country today is a foundational and diagnostic errors in only one of the places that would benefit from attention to this.
The third goal is ensuring that health information technology and support information for healthcare professionals in the diagnostic process -- we had people that were human factors on the committee and really talked about -- I think what Arlene in her presentation talked about not only HRT to make care safer but to make sure IT is safe. We talked about elements of that. We talked about working together to work -- to make sure that the IT use and process met all the criteria that the standards for interoperability are met by 2018. What I will say is when I looked at this report and the back at the 2000 back at the 2011 report on making health IT safer and basically said what they said. Do it now. I think there were a lot of things that were in the report that haven't yet been acted on so that provides more detail and a roadmap in the IT space. The fourth goal was really deploying ways that we can learn from and reduce diagnostic error. This is what I call an all in approach. This really requires healthcare organizations and others to be very active in learning from and reducing diagnostic errors in real practice. This calls out the rules for accrediting organizations and Medicare conditions and participation. He calls out a really -- the important role of autopsies -- we use the word postmortem examinations to reflect the fact that the technology is changing that we've really need a much better system for routinely conducting these examinations on a representative sample of patient deaths so we get one of those problems that we have with the way we currently understand the numbers. Because of the road to health professional societies and talks about the choosing wisely campaign and the importance of him -- engaging all professional societies and which their particular specialty could enhance the role of diagnosis.
As I said the work system component was a critical piece of what we did go and the physical is to -- the fifth goal is to ensure improvements in process and performance. This is very familiar to people who have worked in the safety space generally to design work systems in a way that work for both health professionals and patients. And to work on the communication component which is something again that we see as a challenge.
The sixth goal is to develop a reporting requirement that facilitates improved diagnosis through learning. We called on AHRQ to encourage and facilitate voluntary reporting and to evaluate the effectiveness of the organizations as a mechanism for doing this work. We talked about the legal environment and some of the things that can be done in liability, malpractice, coverage to improve the environment around diagnostic error.
One of the things we were trying to balance is the fear that we would potentially be promoting excessive testing in the search to reduce diagnostic error and that is definitely not where we landed. There is the overlain concern about the role that medical liability place and people tendency to go there. The seventh goal is to design a payment and care delivery environment and there are specific instructions to CMS and other payers. We were doing at balancing act between the bright new world where there is no fee for service and the reality of the current world where there is. We tried to split the middle and make recommendations for both kinds of situations.
Finally there is a whole chapter on dedicated funding for research on the diagnostic process. The community observes that there's no single home for sing -- observation. The NIH is surrounding diagnosis that open perfectly arrived at. We called for a effort to develop implementation for that agenda over time. We called out the role of public-private partnerships and you can see the list here of the varieties of who we thought she could get -- should get engaged in this work. This shows you as we went on the community identified a large number of research opportunities and you can see them categorized here and some of the kinds of questions that we thought needed to be answered for research listed below. One of the conclusions was that improving the diagnostic process is not always possible that we saw several examples that it was possible but it's immoral, professional, and public health imperative. His highlight some of the work that is already going on. I know just will get more into that and not only is it an imperative but we think it will require re-envisioning the process and a white commitment to change. Business as usual will not cut it and it is time to do things differently.
Said that shows you the report and with that I will turn it to Jeff.
Good afternoon everybody. It is really nice to be back with you today. It has been almost a year since we talked about the patient research portfolio so it's a pleasure to be back and talk about this topic. It is hard for us to consider this topic in the report and not think about where we were 15 years ago and at that time I was a resident on the preventive services task force but I think the parallels between patient safety and diagnostic safety are pretty interesting to us. We are not in the same place in terms of national experience and a plan health research but there are still some parallels and that opportunity not only for research but also for improvement. Thank you for doing such a great job. This makes my job infinitely easier having someone who actually sat on the committee and did all the heavy lifting. I will release it through this quickly and get through the things we're doing right now -- I will describe the current funding opportunities we have out and when I get to that that's at least one area where we would like the committee's feedback and the Council's feedback and that is on -- we tend to set those fairly broad but we have some specific things that we are highlighting which among those might be priorities. Please think about that as I move through the presentation. In terms of the folks that do the real work at HR Q Kirk Hendrickson is in the audience he has been at AHRQ as long as I have an longer be his expertise and also specific expertise in this topic has been a real asset. Not only to each of you but -- not only to HRQ but to the committee.
If I can just interrupt what we are doing personnel. For those of you with really sharp eyes you may notice that just looks a little bit different than the last time he was here. He was in a different uniform. He has been promoted to the admiral in the public health service. [applause]
Thank you for your support of that too. Since he brought that up I will mention I had not heard your analogy about aircraft and healthcare. I read on a few of those aircraft and even more importantly it confused the metaphor even more. I used it to evacuate patients. They did not think they were redundant. That part of the analogy will drive through AHRQ. So Beth did all the heavy lifting in terms of the nature of the historical highlights and I will touch on AHRQ specific aspects of that and the national Academy report has been well described focusing on our contributions and their ongoing activities. Just a couple of things to highlight here. Even though the attention has been lighter on the specific topic of diagnostic error aspect did a great job pointing out. This is a set of problems that have devastating consequences for patients and families. I think one of our patient representative partners throughout much of the patient safety journey has been Sue Sheridan and the specific experiments of her family unfortunately twice, to patient safety events, and these were both diagnostic error events. Unfortunately her story is not unique but she is particularly experienced with the devastating consequences. I think the other point that I would point out is the last bullet on the side and that is that a lot of what happens in healthcare is downstream of this part of the focus of making a diagnosis. Presumably everything that follows an incorrect diagnostic or things that follow on a misdiagnosis are affected by this very point. It is pretty fundamental and foundational to much of what is done in healthcare or what is not done and what should have been done.
I think we have covered this pretty well but a few things to point out. I think the fourth bullet has best said the wheel of activity and the conceptual model that you pull together. That is quite real and quite complex in terms of how the diagnostic process really is an evolution and evolving process and a lot of the early research has been trying to describe that in a specific way to talk about where the weak points are. I would just say contrast that with other patient safety events that are more discreet -- discrete and the prevention of CLABSIs it is a very discrete event in itself. It is in line with a much more complex diagnosis. There are many more examples with cancer and more obligated things that we are trying to work through and ultimately arrive at a diagnosis before treatment even starts. I think one of the things -- hopefully some of you were able to see the release of the report -- Chris Castle who is a committee member of describing the importance of something that doesn't happen and that's provided feedback hearing about when something as significantly gone wrong as I hit an event so the feedback to a primary care provider may make a definitive diagnosis and many time that feedback doesn't make it back to where it of me to be for action. The next two slides are really historical in terms of -- ever since the problem was documented as part of a safety problem sort of what has happened and what has not happened since then so AHRQ was instrumental in some early work we had at least a few grants in the early patient safety work will focus on diagnostic area touched error and as early as 2008 we began funding through large and small conference grants or annual conference focused on diagnostic performance that ultimately evolved to become the group that put the conference on. It involved to come visit improved diagnosis in 2012 a few the articles by March -- by Mark Graber and [Indiscernible] for you saw with him on the testimonials of the conference those are key publications that were more recently released and then finally we would get into more detail about the grant solicitations that are dedicated to this problem of diagnostic error which we released earlier this year and of course the IOM report. We cover the definition and here's the conceptual model including an expansion and focus on the outcomes we are all trying to get to. So the slide which as internal staff now have described I think it is fair to say AHRQ has had a steady trickle of research funding on this topic of diagnostic error. I would encourage you not to over interpret this data. What you see is anywhere from about half 1 million -- I would say the lower end is zero and 2008 by up to about a maximum of $1 million a year. In comparison to our broader patient safety portfolio not a whole lot of dedicated funding. This is competing with other compelling problems that we know about such as CLABSIs an medication errors. It's not that we haven't cared about this project it's among many important topics. [captioners transitioning]
[ Please hang up phone so relief captioner may connect to audio and resume captioning. ]
I would say the first two projects are drunk and bigger branch projects where investigators in these cases look at a broad brush of all types of diagnostic misadventures, if you will. Misdiagnoses, late diagnoses, or flat out wrong diagnoses. The first was done by [ Indiscernible ] and it looked -- it focused primarily on primary care and the main challenges, one of the main challenges the work brought was they put the diagnostic process into five different categories. A patient and practitioner and actual clinical encounter. The second was performance and interpretation of diagnostic test. I think that's one of the topics of low hanging fruit within diagnostic error. We have an improvement tool that reflects that. The third follow up in tracking and follow-up of diagnostic information. And the for this subspecialty and referral. And then finally patient specific process so the patient doesn't know how to interact with the system or doesn't bring the right formation to the system, that leaves a provider down the wrong path and that comes with those kind of problems. And with Gordy ship's work was the same perspective in terms of primary care what happens with respect to diagnostic error in that setting. But he used a different methodology with survey providers to ask them about specific cases instead of looking back and EHR triggers and specific visits. In the final project represents the specific challenge of undifferentiated abdominal pain and a deep dive if you will and that topic. I think what is interesting to us is to think about these projects is a collection and even though the last is focused on a specific problem, it also informs the broader perspective. I guess for us this argues for a more comprehensive look across specific challenges, specific specialties, and even specific diagnosis and maintaining a broad picture and in particular for providers that are faced with multiple different challenges, different chief complaints for example, the challenge of really sending them down the right diagnostic path and reconsidering when something ogres that suggests -- occurs that suggests a different path. That's an example of projects we funded out of the portfolio. This is a slide to remind me that the IOM's committees recommendations are really highlighting the fact that much of the general quality improvement tools and resources that exist now not just from AHRQ but in general in the field are applicable to the specific problem of diagnostic error. These are specific to AHRQ examples but the one on the top left is the diagnostic error specific tool and what I mentioned focus on what I think what most would agree is low hanging fruit in this general topic and that his lab tests and failure to follow up on lab results. The other three tools listed here are very much broad-based. Two of them the questions are the answer and the guide of patient and family engagement are around the patient role and the interaction between providers and the importance of clear communication and how that works. The last TeamSTEPPS I think you all are very familiar with. Probably it could be functional in at least a few of the IOM recommendations including feedback to providers but also throughout the process of arriving at a diagnosis and sharing information. These have wide applicability to the topic. Nearing the end here this is a bit of an expansion of key topics that we highlight in each of the research grant solicitations that are currently out now. The first is the letter R1 configuration and this is the more fundamental research that we are trying to foster through this FOIA. We think about this throughout the general patient safety portfolio as the identification of risks and hazards that predisposed to patient safety problems and in this case diagnostic error. You see the way we try to explicate that in more detail and we are interested in research across that whole front. The second major grouping of topics year is the -- here is the solicitation grant that is focused on after you know about risks and hazards that exist related to a particular problem, how can those be most effectively applied in the healthcare setting? Also to include things taken up by the IOM such as payment incentives in the potential for payment reform. We can come back to this slide up and help support the discussion. The final slide I have is really just a subset of the overall recommendations from the IOM report. These are the AHRQ specific recommendations, common formats development, and let me say more broadly supporting a more effective reporting environment. One of the more specific things that was recommended was the development of common formats and a standardized method for collecting adverse events of diagnostic error. We're in the process of the early stages of that and we kicked off environmental scan. That is something we think we can't do soon enough so we are looking forward to having that information as soon as possible. More broadly the effectiveness of the TSO program across the board as one tool that can be applied to the specific problem of diagnostic error. Finally we are very much in support of more dedicated research in partnership with other parts of the department. The final point I would make is not only are some of the assets we have nationally in terms of quality improvement tools and quality improvement experience, not only are those applicable to the problem of diagnostic error but similarly the subject of our research as this list demonstrates really spans the entire set of goals I think. It's not unique to just the goals that HRQ is focused on although those are specific things we are absolutely undertaking. With that I will stop and look forward to your feedback.
I'm usually very supportive of this and as a condition this is one of those things you hear when you do [ Indiscernible ] because of the [ Indiscernible ] concept and diagnostic errors getting the wrong diagnosis or not following up on abnormality, it seems to me to has an equivalent to the events we have gotten used to seeing on the treatment or management side. Underneath that iceberg there are things like incident enrollments and things that according to the definition you have are not an accurate explanation of the patients help from and in some -- and effect is something accounting the exploration and taken on its own there are downstream consequences of that diagnosis. It's a problem of the diagnostic process and not an error. Out of scope and in scope. That plays a big problem. What about the issue of over diagnosis? It's similar to the issue of incidental finding but there's no error in the diagnosis but just the people react to the finding with too much of a reaction. There is treatment that follows the diagnosis that the patient would never have affecting their life. It's not an accurate explanation of the patient's health problem and it was a problem invented by using too many tests. I don't see that there. Maybe --
The [ Indiscernible ] does talk about over diagnosis but that was specifically not a main part of the report but it is put in that piece in context in the report.
Operate. -- All right. Than the other thing as we sometimes see situations where the pathologist report is accurate and say they see no cancer cells but the ultrasound report say of the thyroid gland would suggest there could be cancer in the thyroid. The place where the needle went and did not get any cancer cells. So the ultrasound is accurate, the pathologist was accurate but the putting together was not. That involves base theory and [ Indiscernible ] I presume that going into the cognitive and teamwork side of things, I wonder if maybe going across areas and a wonder people writing the grants might see they can go across the items.
Victor, can I be clear. You are asking about four things you have listed whether those can find a home --
No. Just what are the priority areas.
I was trying to understand that.
When you see them they are very informatics that there is other stuff that happens all the time that has enormous consequences and captures the attention of people because these are the kind of things that [ Indiscernible ] was talking about and you don't need -- someone made the diagnosis of [ Indiscernible ] and you have a new-you need the new hip. You have an enormous cost implications and it's a big thing but it's not the [ Indiscernible ] three a day or something. It's not a huge diagnostic error but errors in the diagnostic process. Or at least sub quality or lower quality diagnostic process markers. And the last thing, 2 other things. One is the issue of time in the consultation. Many of us get the impression if we are hurried we will miss something. Finally the consultation has been something that is understudied and we need to get a handle on. And lastly downstream consequences of diagnostic testing made it very hard to do shared decision-making in relation to test because you can bring up the issues of what it entails but then the downstream consequences become are we branching [ Indiscernible ] one of those things where you gets Sir real very quickly because there are so many things that can happen to you. So getting better at explaining downstream consequences of testing strategies has slowed us down in decision-making area of great interest.
Sherry?
I'm not exactly sure where to go with this but just to share large employers have been putting in programs where they have a third-party with a second opinion or an advocacy and I mentioned this before but specifically on this issue, the companies that we have seen reports the findings are the folks who go through that process often have something in the magnitude of one third the diagnoses are changed and two thirds the treatment are changed. They have done actuarial studies with third-party external firms that say some companies that are looking at low back pain issues specifically, they have identified a certain number of those surgeries that should not happen and then three years later they look and say they still have not had it and they are okay. It's not research specifically in the way that you guys view it but most large employers have a firm like this now in some way or form. Either with the ability for free to go to a different partner or someone that is funneled through a center of excellence or even one vendor where in the 2 or three-day span you can have your file reviewed by a top physician in the country and actually get on the phone with them to talk about it. A lot of these are cancer diagnoses and I think it might be interesting to see what those are and how often does get changed but cancer diagnoses for folks that don't do very many of very specific cancers to the best doctor in the country. It's an interesting thing that employers are doing.
This is really important work and I want to come back to your comment that what is a timely diagnosis is a research question. I wonder whether the framework which is very well laid out needs to more explicitly call out the passage of time between every one of these steps as well as the eye durations -- iterations of the diagnostic cycle. There is some time delays that are the course of the patient or it just takes time for symptoms to develop an there are other delays that really don't have to be there. And differentiating between the ones that are clinically or have to stay on the ones that really our system failures of one sort of another need to be distinguished and eliminated.
Jim?
This is such an exciting report and congratulations. This report right from the beginning said patient and patient and family. There was never any doubt that that wasn't the focus of the work. Sherry, thank you so much because I think this is so much about second opinions and so much about test practices. My question is I was thinking about this, where does PM-based care comment? -- Team-based care. Is it a problem or a solution?
I think the committee thought team-based care is a solution but I think in order to be effective in the delivery of team-based care which start with team-based diagnosis we have to back to training and the culture of practice. I think the idea we can train people in silos and then magically throw them into the world and hope they can work together is silly. That would be the technical term. The report does really pull out the need to pay attention in training to the development of these kind of team-based skills. Also to make sure that the environment of practice enables that as well. I think both parts are called for in the report and I do think we saw it as a solution and also Jeff and I could have shown many diagrams in the report but there's something that shows the patient and family as a piece of the team so we really didn't see them as separate from the team. They really are part of the team and we really haven't trained people to think about strategy that effectively.
I can add onto that. Did you use as your initial gathering nursing input, pharmacist employed? -- Input.
Yes. We had actually at least one nurse on the committee and it was definitely something we talked about quite a bit. Pharmacy was not called out as much as radiology and pathology but definitely something we talked about. Leon?
So 2 thoughts and one I think this is important work but one issue I am struggling with a little bit is going back to your concept of the over testing piece. I'm in an academic environment and already live in a world where residents and staff are terrified of missing even one thing so everybody's getting over tested to begin with. We put this out there which we should we run the risk that becomes more so and the second question is around when you look at this did you look at the settings about the people are in a we talked about the ambulatory piece but some things we do in the emergency department are different than in inpatient and what we could miss in one location may be more acceptable in one location than the other.
We did consider different settings and I did [ Indiscernible ] and emergency medicine last week and emergency medicine is like a petri dish for diagnostic error. Actually that report does something I call an all in call because we think those settings require different -- they all have to be looked at because there is no single pathway into diagnosis. The pathways are [ Indiscernible ] and any particular diagnosis could start any number of places. But the work environment that is represented in those different settings can produce very different results. We really need to unpack all of that. I will just say the committee first of all was told that the whole overdiagnosis thing was not in our charge. I don't know how many of you have been on an IOM committee but the charge rules all. And then it was brought in kind of late in the game but we struggled throughout the process with finding what I would call the right balance between the Goldilocks solution where it's not too little and not too much but just the right amount. I think some of the analytic tools that are becoming available to help people kick the next -- pick the next test to go to pick -- using probabilities may be helpful in navigating the finding of the right balance but there wasn't a lot of evidence about how effective the tools are. There were a lot of things that work emergent but where we didn't have very good assessments of how well they work and how much they could avoid the problem. It became hard to make any specific recommendations in that area is another thing that comes up when we talk about the report is like all those fancy-schmancy analytic tools. It was premature for us to draw conclusions so we definitely pointed to the importance of some of those tools and studying. David?
So I think thanks to both of you for the reports. I think what makes it challenging is it's really interaction of three issues. There is the diagnosis, there is the treatment that is connected to the diagnosis, and then there is the time relationship. Because you have some diagnoses where you have lots of time to make it and the treatments you are considering a reversible whereas getting a wrong pathology diagnosis at least to an invasive surgery, you can't do that over again. Where as you can take your time to find out why a patient has pain as long as it's not a dissecting aneurysm. It seems like it might be useful to think about different constellations and how these factors are related that will play out differently. In terms of research agendas, I think there are 2. One is it's very hard to get complete assessment of diagnostic error without good longitudinal data. I think I heard some illusion to that but as we get data systems and natural language processing can attract more of the text data where the signs of the error are probably there. That might be a good research agenda. Let's mindedness and see what we can do in terms of finding error rates. You couldn't really get in a cross-sectional study because everything looks good and you don't know until six months later that actually there was an error there. And often an error is there because the information was not collected. It was right based on what the patient told you but the patient wasn't asked the right question and it was only later they realize they traveled outside the country or we think about the Ebola case that Dr. Singh wrote about and use the electronic health record. And then the second one is looking at the consequence of good and bad of any effort to detect it. I think it's an interesting analogy to the healthcare associated infections. 2 decades ago we said that's the price of healthcare. You will have infections. There was a paradigm shift saying no, you can actually reduce it. I do think there is probably an assumption that we are not perfect and there is a certain error rate that is a function of being imperfect and having imperfect diagnostic tests. We also note that that error rate is probably not where it should be but at some level if the consequence is everybody gets tested up the was to and everyone in the test leads to unintended Quad Cities there's a place where driving it down to zero might actually have problems. Some sort of agenda looking at that to see where you can move the needle but where do you start to accrue unintended consequences. Then the last observation, it seems like one of the fundamental problems as we are really bad at uncertainty. I think a lot of the problems are in part because the commission doesn't want to say well I have a 70% chance this is what is causing the problem. They think if they give a firm answer and there is a placebo effect they will get better and they don't really want to say there is a 30% chance I am wrong and you need to come back and tell me if I'm wrong because then I will pursue the other thing. Instead the patient goes and sees another doctor because they are angry and never find out about it. I don't know what the research agenda is on that. I think AHRQ has done research in that area but obviously it's part of some of the things that are outlined in the eight areas in terms of patient clinician interaction.
Jim?
It definitely strikes me as an era [ Indiscernible ] and we dream about doing electronic [ Indiscernible ] so taking but we have in the electronic health record and just looking at the tip of the iceberg and the left chronic health record is a lot about the pathways of the diagnosis from the same rooms and treatment outcome assuming you have all of the records from that patient alone that longitudinal journey. I wonder about some way to characterize -- there is not one ideal pathway but some ideal pathways in using this [ Indiscernible ] to how far some DBA and what are the characteristics of those that deviate very far off the path to have experienced significant diagnostic error. And just thinking about this happen every week, I had a patient who ended up in the emergency department, had all the testily unmentioned as well as test set on by the neurologist than a week later all the lab test find our way back to the primary care physician Mac who had no idea the patient was in the ED. At that point what am I to do with all this information and covered incidental moments and try to get the patient back into see neurology. The patient can't afford it and doesn't want to access the. The issue of who is on the team and what is their responsibility and electronic health record is better for me in some ways but it worse. At least I have those lab results whereas before they would've gone and a black: a couple years later we would've discovered there was an abnormal lab. Apparently after hours of uncompensated work discover that it could've been myasthenia gravis but only affecting the eyelid of the patient and that's what the lab result meant. It's just a really complicated system but I can see that in the electronic health record following the patient through and if you do that for hundreds of thousands of patients and try to get a better picture, with ICE and qualitative methods and the natural language processing we could get an interesting picture. It would require multidisciplinary collaboration to do that. That's happening hourly, daily and the stories come out with one patient and I have many like that. The data would be fascinating.
These are [ Indiscernible ] Jens view in the earlier conversation about the value of the patient narrative in the work going on in terms of [ Indiscernible ] wondering about what might be the contribution improving the diagnostic processes by really focusing on the patient narrative as a central contribution. I think about this in the context of precision medics and interaction with this whole world and evolution. I don't have any answers there but I think as we're looking at genotypes and phenotypes and all this stuff, what role does is play in the research agenda? If you were to build a case study which we talked about earlier, thinking about how to get to system improvement in performances I would say 2 areas you might want to pay attention to his frailty -- his frailty as a diagnosis. We traditionally think about the diabetes and cancer and so on but now with a recognition there is an absolute pattern which we should be following an early detecting functional decline and movement into the most costly agenda for our society that might be very interesting. And the other is behavioral health. I don't know what the possibilities are here, but some work is suggesting lack of communication around between and among sometimes due to regulatory challenges in all sorts of problems but wondering whether or not they may be 2 key areas I think are important for us to resume does pursue. -- Pursue.
I'm just wondering about if there is a role for quality measurement in your research agenda. If we don't measure it we won't improve so I was wondering and I know we are early into the field of diagnostic errors. How do we measure diagnostic competency? For example the macro bill requires CMS to develop measures for all types of specialties and those specialties that have the lowest or zero number of measures are pathology for example. And pathologies are in the business of doing diagnosis and how do we measure their diagnostic accuracy? It's a challenge I think.
There is a fairly large chunk of it chapter on measurements and their critical role in both pointing out how hard it is to measure diagnostic error and how if we don't measure it we not only can't get better but almost all the areas that the committee had recommendations in require measurement to both understand the nature of the problem and the effectiveness of solutions. It's definitely important and I think there are those of us to have our ion [ Indiscernible ] as a possible source of funding for doing some of that measure development work. I totally agree with you.
Rill quickly one additional positive outgrowth of our support of initially to research conference back in 2008 the society -- the establishment of the society and even more recently in preparation for the release of the report, the society took the lead in starting a coalition to improve diagnosis. If you have not seen that group it's worth looking at. A lot of the members of that group are in fact the medical societies which I think as the report highlights progress is not likely to be very much without the inclusion of the medical societies and to include nursing and not just medical but all clinicians essentially. When I was trying to make up comparison before between patient safety and diagnostic era -- error, I think one of the national expenses we have is the work on culture and the importance of fine-tuning the message not only to patients but also to providers because there is a real risk and understandable push back or the feeling of being pushed back or finger-pointing. We live quality and safety pretty regularly and thankfully a lot of clinicians do too but maybe not at this level, so some messages we take for granted don't completely come across to the average condition. I think we still can't be too careful in getting that message right especially when we start to speak of cognitive errors in what's happening inside the clinician said. Very risky business in terms of Ms. concluding -- miscommunicating ourselves and how we want to achieve that.
I will say I went through a process on the report and this is not an area I was completely familiar with and as they learned about the challenges facing the full diagnostic process I had that, oh my God it's amazing we ever get it right. I just want to build on the role of specialty societies. I think the committee absolutely understands that healthcare professional show up every day wanting to be the very best they can. The report really is about how we can help them do the job they want to do by addressing some of the things that just frankly get in the way of them arriving at an answer that allows them to make good decisions with their patients about what to do. I think this report hopefully calls out -- it's a rich area and one that I think if we pay attention to will benefit not only the diagnostic process but people around the room have talked and everything that follows from that. Many of the systems level improvements are ones that serve us well across the board. As a look at safety and quality and now this area, there are a lot of common themes that really suggests the delivery transformation work that needs to happen if we want to deliver on the value proposition that is required for healthcare. I know that we have David with us for the public ComEd -- public comment period. If you would introduce yourself?
Can people hear me? Thank you very much. Thank you to AHRQ and the counsel for the opportunity to speak during the public comment period -- period and I will be reading prepared remarks. Thank you for the opportunity to address the advisory group and my name is David and I'm associate professor of neurology at the John Hopkins University school of medicine and I am lead for diagnostic safety and quality initiatives that the on-site initiative for patient safety and quality directed by Peter at Johns Hopkins. I have conducted AHRQ NIH funded studies of diagnostic area involving patients with stroke and diagnostic safety is my primary research focus. I am also a founding board member of the society to improve diagnosis and medicine on whose behalf I am offering these public comments to the national advisory Council. Our society is a nonprofit physician led organization and the only group focus solely on improving the quality and safety of the diagnostic process. Our society was responsible for soliciting the IOM report a diagnostic error that you heard about today we strongly endorsed both the report's findings and its recommendations. AHRQ remains an unwavering supporter of the movement to address diagnostic area. AHRQ is funded our societies diagnostic error and medicine conference since it inception in 2008 and provided key financial were -- support for the IOM report and reach we announced our one in our 18 to study diagnostic safety. It's a first research funded dedicated to diagnostic safety from any federal agency. Our society would like to emphasize three stated goals and recommendations from the I want report better directly relevant to AHRQ and require immediate attention to advance diagnostic safety. First goal six of the IOM report focuses on improving learning from diagnostic errors. Recommendation 6B calls on AHRQ to develop a common format that is specifically designed to allow local organizations to report diagnostic error cases to the patient safety organizations. We strongly support this recommendation and stands ready to support AHRQ in developing the new resource as a top priority. Second, goal eight of the IOM report emphasizes the importance of coordinated diagnostic safety research. Recommendation 8A calls on all federal agency to revise and fund a coordinated research agenda to address diagnostic error by the end of 2016. That's pretty close. The report mentions all of HHS, DOD, MBA but we strongly recommend AHRQ lead the effort to create the agenda by first token been in a multi agency roundtable discussion on the subject in partnership with [ Indiscernible ] and the coalition to improve diagnosis. Recommendation 8B calls up public-private partnerships to support research on a diagnostic process. AHRQ has already joined numerous foundations and professional societies as part of the coalition spearheaded by S IDM we suggest that AHRQ partner directly with them to develop strategic alliances focused on specifically growing and enhancing diagnostic safety research through interagency and private partnerships that can being key stakeholders and diagnosis related research. These would include other funding agencies such as NIH, [ Indiscernible ], and the Robert Wood Johnson foundation along with average the groups among others. Third and finally more generally the goal of the report says to provide dedicated funding for research on a diagnostic process and diagnostic errors. Diagnostic error according to available estimates affects perhaps 12 million Americans each year with up to one third of these events resulting in patient harms including death. At a minimum diagnostic errors appeared to be responsible for 40,000 to 80,000 deaths annually in US hospitals making it one of the top 10 causes of death in our country. We urge the advisory Council to support significant congressional expansion of the AHRQ budget to direct appropriations of funding available for research and diagnostic safety can be in proportion to the harms associate with diagnostic error and I thank you for this opportunity to publicly comment.
Think you David.
With that and I'm not aware of any other public comments. Thanks Jeff so much. I feel like we should now salute you in the room. Okay, so we want to thank the NAC and everyone we heard from today. Rick, Jim, Allen, Joel, Jenny, Jessica, and Jeff for the presentation and the AHRQ staff here in the audience and attended in person and if we have anyone , those 2 people on the webcast, thank you. I realize we are bumping up against time here but we always at the and try to offer the lightning round on final thoughts and I particularly welcome any final thoughts for those of you this is your final opportunity to offer final thoughts. If anyone has any parting words of wisdom for AHRQ?
First I want to say what an honor, privilege, and a joy it was to be part of this group and to have the input and share the input of such a wide array of prospectus. As an advocate I will say my last words and I really encourage AHRQ as an organization that brings evidence and improves the quality of care through the use of evidence and engaging the appropriate stakeholders to really encourage all researchers to include the advocate perspective at every level of research that is being done. I will use just as an example, the [ Indiscernible ] is greater we are looking at comparing the effectiveness of various procedures, medications, etc. that were in all likelihood developed without any of the advocates input. We know now through experience that when advocates are present at a research table and when we collaborate with researchers and scientists, the questions we ask our different. We ask where is this research going? How will this improve lives? Is this going to less than death? I want to encourage more of that kind of input. There are organizations that actually train advocates to understand scientific language and terminology and scientific process research development and the continuum of research and development of evidence. Also epidemiology does study so we can look at the larger public health picture in the impact of help on that. I say that because it's easy to involve quote unquote patients as part and we have to be very careful with patients that are included because somebody knows a good patient versus someone who can speak on behalf of a patient population, has been trained in some of the scientific methodology, and reports that back to an organization. There is an appropriate place I think to capture direct patient input but when it comes to research and policy decision-making, I think having trained advocates is really much more beneficial.
Thank you Carolyn. Thank for your -- thank you for your service and I wish you luck and your next medical journey. Keep us posted on that. Gene?
I love participating on this committee. I just got to meet wonderful people and I would -- Carol and I are going off and I know Patty is a public member that is not here today but I encourage you to having more and more patient public members. I sit on a lot of committees and the one I love the best is the stakeholders committee for the national Board of medical examiners. It's made up of people just like me and we get together twice a year and have the best time because it is that shared outlook. It really energizes us and encourages us. Thank you for having public members and you can never have too many.
Especially the right ones. Leon?
I want to thank you for the opportunity to participate on the group. It's been a great experience so much so that I put the dates for the 2016 meeting on my calendar before I realized I was getting kicked off.[ Laughter ] That frees up more time for other things. I have learned a lot listening to not only the folks you brought into present but obviously the folks around the table so that's been great. My parting piece would be to make sure that we include our trainees and what we do, we think about medical students, nursing students and if we think about interprofessional training, if we can capture folks at the trainee level instead of waiting till they are already out in practice the better. If we can ENGAGE GME and AC TME and all those folks and what AHRQ does I think we will be helpful in the future.
Rick, any parting thoughts?
And like to extend my thanks to Jim and Carol and Leon for your service and for all of you I found both the suggestions around the framing and also the conversation around HIT and suggestions there that you made were very helpful. This last conversation around diagnostic error as well. I think you and thanks to Jamie German for getting us here in organizing this. [ Applause ]
I look forward to seeing most of you at our next meeting which is --
It's under discussion. You pick a date when I am out of the country.
I look forward to seeing you at the next meeting.
I think we stand adjourned. Safe travels. Thank you.
[ Event concluded ]