Improvements to Rural Health Care through Patient-Centered Research

Improvements to Rural Health Care through Patient-Centered Research


Good day everyone, it’s noon. Is that good morning or good afternoon? I think it’s good afternoon. So good afternoon. Thank you so much for joining us today. I’m Jenny Luray, I’m with Research!America. Research!America educates and advocates on
behalf of medical and public health research to improve healthcare for all Americans. We are so thrilled at the turnout today and
I think more people will be arriving for a terrific panel of experts to discuss how challenges
that we’re facing in rural healthcare can be addressed by patient centered research. Please join us in the conversation at #ruralhealthbriefing. And also, please silence your phones, this
session is being video recorded. The panelists will share what makes health
care delivery unique in rural areas and how patient-centered and community-based programs
can lower the risk of heart disease and other chronic conditions. Senator Van Hollen who’s been a leader in
the Senate on patient-centered–centered outcomes resource–research, excuse me, will be joining
us in a few minutes. But until then, I’d like to introduce my colleague
Caitlin McCormack who is the associate director of public policy at the patient-centered outcomes
Research Institute. She’s just going to say a few words about
what PCORI is and the value to the healthcare system. Caitlin. Thanks so much Jenny and thank you all for
coming today we’re delighted to have you to talk about this important topic. I’m Caitlin McCormick with the Patient-Centered
Outcomes Research Institute. PCORI was created as a private nonprofit research
organization. We’re led by a board of directors, supported
by advisory committees and designed to represent the entire healthcare community dedicated
it–dedicated to supporting patient-centered outcomes research. So we really do look to kind of bring the
full gambit of stakeholders all the way from top level researchers to patients and everyone
in between to the table to try to move research forward. We are also the leading funder of comparative
effectiveness research, that’s research that compares how well different treatments and
care options worked for patients and doctors so that they have the information that they
need to make decisions that are right for them. We think in rural areas, we–in rural areas,
we are funding research that seeks to improve care and outcomes for rural populations focusing
on both rural–residents of rural areas as well as on conditions that impose greater
burdens on them than on others. And we’re really grateful to have our panel
here today as we explore how patient-centered research and offers a unique opportunity to
identify and implement health solutions to meet the very unique needs of people living
in rural areas. So thank you all, thank you to our panel,
we’re delighted to have you. Jenny. While we are waiting for the Senator, I think
we just go ahead and kick off the panel. Okay, Lisa Simpson is the CEO and president
of AcademyHealth and a distinguished healthcare policy thought leader. Lisa is going to moderate today. Lisa please take it away, thank you. Thank you Jenny and good afternoon. Come on, let’s wake up. Alright, good, because this is a really exciting
and important topic. So as Jenny said, I am the president CEO of
AcademyHealth and I was just delighted when I got the call about could I be part of this
important discussion that we’re going to have with three wonderful experts about rural health
and patient centered research. So the format for this panel is I’m going
to first read very brief like title and names of our three moderators. I’m going to tell you a little bit about AcademyHealth,
and why I said yes so quickly because we care deeply not only about the focus of the–the
briefing today but also about the Patient-Centered Outcomes Research Institute. And then we’re going to have a much more sort
of informal back and forth dialogue with our panelists and of course leave time for all
of you to ask questions. So to get us started, we have three amazing
panelists, you should pick this up if you don’t have it, that’s where their full bios
are included. I’m going to read their titles for all three
and then switch to AcademyHealth. So we have in order, Debra Moser Dr. Debra
Moser who is professor and Linda G–C. Gill, chair of cardiovascular nursing at the University
of Kentucky. And obviously, she–you will hear she focuses
on research preventing cardiovascular di–disease and particularly in populations with marked
health disparities because we have to remember in all our research that not all things are
equal in this country and often, geography is destiny and that is often true with rural
settings, so let’s remember that. Then we will turn to Dr. Bill Borden. He is the chief quality and population health
officer at the George Washington University medical faculty associates and an associate
professor of medicine and health policy at the George Washington University. And one of the other many hats that he wears
is he’s the–he serves in a leadership role on the quality and value-based care in both
the American Heart Association and the American College of Cardiology. So we’re going to hear more about heart health. And finally, Maggie Elehwany will speak from
the perspective of a National Rural Health Association which she joined in 2007. She is their head lobbyist for the Association
and responsible for government affairs and policy and she brings to that over 20 years
of experience of federal legislative experience. So a wonderful expert panel. So if you’re wondering what is AcademyHealth? How many of you have ever heard of us? okay, a couple of us. So we are the National Association for health
services research which includes patient-centered outcomes research and health policy. And we have over 4,000 members across the
country, both researchers what we call evidence producers in academic and other settings,
but also evidence users. And we hope all of you if you’re here on the
hill are evidence users because it is really important to use evidence in your decision-making
for policy to improve health in America. We work on a lot of different initiatives
but I want to sort of touch on rural health because that is the focus of today’s briefing. One of the things that we do is we manage
a database for the national library of medicine called HSRProj, kind of a wonky word but it’s
projects in health services research that collects not just what the NIH reporter has
about what NIH funds, but actually funding for all topics in health services research
across over three hundred funders. And so we did a very quick preliminary search
on rural health and we found that in the last ten years, there have been over 900 projects
funded in rural health, nearly 800 of those are in the U.S.. Our colleagues in Canada actually fund a lot
on rural health as well, you can imagine they’re also a very rural country in many respects. And the top funder of research in rural health
is not–is not surprisingly HRSA which has an office of rural health that has been around
for I don’t know how many decades. But PCORI has also in their brief history
according to our database with preliminary numbers and we don’t have the full last year
in on nearly 40 rural projects. So given the short amount of time PCORI has
been around, it’s already contributing significantly to our understanding of health and comparative
effectiveness in rural settings. A couple other things I want to mention from
AcademyHealth’s perspective is just that we also work with state Medicaid medical directors
across every–43 out of 50 states and many of those are rural states. So we’re working with folks in Pennsylvania,
Kentucky, Ohio, West Virginia, not surprisingly on the opioid epidemic. So if you’re interested in anything that we
are doing or could help you with in terms of getting to evidence or getting to people
who are experts like those who are at our panel here, please do not hesitate to follow
up with me. So with that the format for this next session
is–section of our program is each speaker is going to talk for about three to four minutes
giving some sort of grounding information about their work and their passion about improving
health and in rural settings. And then we’re going to have the moderated
dialogue and then turn it open to all of you. So with that, I’m going to go back and sit
down. We thought we would have slides up here, we
don’t, but you have handouts. If you didn’t pick one up on your way in please
do so. It’s a nice visual aid to their remarks. Dr. Moser. Good afternoon and I really want to take this
opportunity to thank Research!America and PCORI for inviting me to present this research. So my–I am centered in Lexington, Kentucky,
this, you know, protected little area but I do research in Appalachian Kentucky, Eastern
Kentucky which is an area that’s of interest because it’s in the top 1 percent of the nation
with regard to cardiovascular disease, morbidity, and mortality. So Appalachian Kentucky has the highest number
of people with multiple cardiovascular disease comorbidities. It has the among the poorest counties in the
United States, it has the county with the worst life expectancy. It has the as they finally say when they found
out they were considered this, the fattest county in Kentucky. It has the county with the highest number
of diabetes, so it’s an area with huge cardiovascular disease disparities and it has the–it’s very
medically underserved and also has a dearth of research that’s conducted in this area
to try to reverse some of these problems. So these problems are persistent over many,
many decades and so we were really interested in trying to test a sustainable intervention
to reduce these cardiovascular health disparities and realize that in a place that’s very medically
underserved, that you really need to concentrate on lifestyle modification which is of course
the–the foundation, the key, the heart of all cardiovascular disease risk reduction. And–and it’s–it’s the whole issue of self-care
which is something we all do every day, whether we do it well or not. It’s how we change our cardiovascular disease
risk. And so we thought of testing an intervention
given the strength of lifestyle modification interventions that’s really addresses not
only the knowledge which is that’s needed which is necessary, but never sufficient but
really giving people the skills and the–the other–the ability to overcome the barriers
that are in the environment. And if you see my slides, you see this picture
of an empty produce beans that represent the vegetable and fruit options from many of the
people living in these areas. We developed a culturally appropriate intervention
and that’s very important to this area because historically, folks in Appalachian Kentucky
are very suspicious of researchers who come do something and then leave and don’t leave
the intervention that they’ve tested or the results of what they’ve tested. So we worked with the community, this is a
patient-centered project, we have an advisory board, and we tested the heart–a specific
heartfelt health intervention that teaches people self-care specifically related to reducing
multiple cardiovascular disease risk factors which is unusual. A lot of research just concentrates on one
disease risk factor when most people have many and as I said in rural Kentucky that’s
the highest number of people with many, many disease risk factors. So we did our intervention with lasted about
three months, tested the outcomes on the cardiovascular disease risk factors of interest at four months
and twelve months. And one of the–our specific aims was to see
if people picked a specific goal to work on, would they have better success? And so they could work on tobacco use, highest
rate of tobacco used in Kentucky, 40 percent of people in rural Appalachia smoked. High blood pressure, lipid profile, human–hemoglobin
A1C if a person was a diabetic, body mass index, physical activity levels and importantly,
I’ve respected that a lot of people don’t pay attention to depressive symptoms. That’s an important risk factor for cardiovascular
disease. And also, depressive symptoms really decrease
your ability to engage in lifestyle modifications. And interestingly enough, this area of rural
Kentucky has the highest rate of depression in the United States. And so, we demonstrated comparing our intervention
to usual care which is referral of patients to a primary care provider for treatment that
the v–the vast majority of people were successful in meeting their goals in the intervention
group compared to the usual care group. Overall, the rate was 50 percent in the intervention
group who met their goal versus 16 percent in the usual care group. In blood pressure, the rate was 88 percent
met their goal compared to 18 percent and these are all with lifestyle changes. And finally, we also tested the impact of
the intervention on everybody’s all of their cardiovascular disease risk factors, not just
the one that they picked because our intervention is appropriate for addressing all the risk
factors and demonstrated a significant reduction at four months that most importantly, you
should hear this part was sustained for 12 months and that’s very rare for any cardiovascular
disease risk reduction intervention. In terms of body mass index, blood pressure,
total cholesterol, HDL cholesterol, depressive symptoms and overall Framingham Risk Score,
and I forgot to say smoking. And I have an interesting story about smoking
if anybody wants to ask. It’s too long for now. So just it–I want to say in conclusion that
I think this sort of intervention and interventions like it that are culturally appropriate and
that really would put in place with the community of interest are really the answer to a lot
of these health disparities we see in rural areas. Thanks. Thank you Dr. Moser and our special guest,
well one of our many special guests, Senator Van Hollen has arrived. Senator, please would you like to come up? I’m just going to do a very brief–brief introduction
because I’ve worked with the senator for many years. He had a highly distinguished and long career
in the house and he’s having an equally distinguished career in the Senate. You know, Maryland is home to NIH and a lot
of cutting-edge biotech companies. And what’s terrific is that not only is the
senator a champion of cutting-edge medical research but is also a champion of making
sure that that research gets into the hands of patients. And one of the ways he’s doing that is through
his leadership in PCORI. So I’m going to turn it over to you senator,
thank you so much for joining us. Thank you Jenny and it’s great to be with
all of you. Dr. I’m feeling a little guilty, you were
talking about change in the healthy lifestyles and I was taking a bite out of one of those
really good cookies back there. It was really good though. So, to Jenny, let me just first of all thank
you for those words. Most of all, I want to thank Jenny for her
current leadership in Research!America and also her earlier leadership in Senator Mikulski’s
office when I served in the house as a member of Congress from Maryland. I work fairly closely with Senator Mikulski
and Jenny. We just learned to just do exactly what they
told us to do when it came to health care issues. Anyway, it’s great to be with you and I want
to thank all the organizations that have helped organize this today including Research!America,
the patient-centered outcomes Research Institute, the National Rural Health Association and
the American Heart Association and all others who’ve been part of bringing us together for
this important effort to focus on the issues that you’re discussing today, and specifically
to focus on reauthorizing PCORI and it is one of my highest priorities to make sure
that we complete the reauthorization of PCORI before the authorization expires at the end
of this fiscal year. And I’m very pleased to be working with my
colleagues on a bipartisan basis; Senators Warner Cassidy and Capito who have been working
very hard and our teams have been working hard and getting input from many of you. So we can take PCORI legislation and bring
it up to date and make important changes. We all know that when PCORI was first established,
there was agreement about the critical need for comparative effectiveness research and
it just makes sense that we would want to compare different kinds of treatments and
find out what works best. And of course, we now need to not only ask
what treatment works best but importantly, in this era of personalized medicine, it’s
what works best for who, which treatment works best for which patients. And the CER research being done through PCORI
is helping generate more personalized, more reliable research that’s directly relevant
to patients and to doctors. We know there are significant evidence gaps
that we need to fill and figure out what treatments can be most effective and that is why we need
to complete this next step with PCORI. And we need to make sure the information that’s
being gathered is put quickly into the hands of patients and to providers so that they
can do what they do best. Which is make decisions and the best decisions
we hope about their healthcare. So that’s what PCORI is focused on, filling
a lot of those gaps. As–as Jenny said, I’m not only pleased to
represent Maryland in the Senate but I’m pleased that my home state is home to the National
Institutes of Health and also FDA and also the agency for healthcare quality research,
in addition to a very strong University and College ecosystem that helps interact with
those federal agencies and others. And the research that they’re being done,
they’re doing is of course critical to the discovery and development of new treatments
as well as improvements in the area of quality safety and the practice of medicine. Now what we did in PCORI is turn the traditional
model a little bit on its head. The traditional model has been that the federal
government provides research dollars to places like NIH and leaves entirely to the researchers
to determine how to best allocate those funds. We wanted to put patients into that equation
and we want patients to be active and inform decision makers when it comes to their health
care. And of course, I think all of us know that
in this era of the Internet the first thing most of us do when we feel some symptom is
get on the internet. And so, I think we have more and more tools
for patients to be engaged but we need to make sure they’re engaged in a way that provides
quality information and can address the issues that they’re concerned, and that’s what we
try to do with PCORI and we need to make sure we get that information from the patients
and then back out to the patients in as quick a way as possible. We’ve had a lot of conversations about how
we can best reauthorize PCORI and the changes we need to make and so, I appreciate the opportunity
to come by here and thank you all in person for the feedback that you’re providing us
this bipartisan group of senators as we go through this effort and to all of you, I would
probably have a good showing of many members of congressional staff and others who are
really helping us in this process. So thank you for what you’re doing. I do think PCORI was a very important innovation
in our health care system and I think it’s already bearing fruit and with your help,
we will strengthen it in the days to come. All right, thank you very much, good to be
here. (APPLAUSE) Thank you so much Senator. Thank you no thank you for your leadership,
it’s invaluable, really important. And I just–folks who are in the room standing,
there are some seats up here please, come join us and we are going to turn to our next
speaker on the panel, Dr. Borden. He’s going to talk to us about heart health
as well. Great. Well, thank you Dr. Simpson and I’m here representing
the American Heart Association. So thank you to Research!America and PCORI
for inviting the American Heart Association to join today. You know, in my–my day job, I’m a cardiologist
and I’m here at George Washington University. And one of the things that we do is working
with a wonderful new technology that’s been developed, something called transaortic valve
replacements. So commonly as people get older, they will
get tightening of their aortic valve, the door that should open and doesn’t open as
much. Traditionally, this has been treated by open-heart
surgery. Now, there is a technology we’re going through
the blood vessel in the groin can go and replace this valve minimally invasively. Patients can go home in a couple of days. This is something that has really been disseminated
across the U.S. and has really become standard of care for many, many patients and improves
quality of life. You know, we at GW care for many patients
in rural Maryland who come into DC to have this procedure. And while certainly, they face challenges
in rural Maryland, you know, there are other challenges that are unique to other parts
of the country. If you look at the state of Wyoming, they
have zero TAVR programs in the state of Wyoming and patients may have to travel as much as
three hours or longer to even go to get an evaluation for this sort of procedure. So while today and a lot of our focus is certainly
on prevention and primary care, that’s a key part of what we’re talking about, part of
the challenges to Americans living in–in rural parts of the country is also access
to more of these advanced technologies as well. So it’s both parts that we need to take into
consideration. So the American Heart Association you may
be familiar with us as the ones who got you your CPR card, you know, if you are a lifeguard
or something along the way, but the American Heart Association is also the second largest
funder of cardiovascular research, and it is a strong advocate for cardiovascular health. You can see in the slides, our mission to
be a relentless force for a world of longer healthier lives, and that very much includes
rural Americans. The AHA has really turned in to focus on rural
health in the last year and so including a recent study that we did to understand the
landscape of cardiovascular disease in rural America, we participated with the bipartisan
policy center and a poll looking at voters impressions around rural–rural health what
we found is that over 90 percent of both Democrats and Republicans consider this to be an issue
of prime importance around health care for rural Americans. You know, even though I’m a preventive cardiologist,
I’m trying to prevent heart disease, I have not been fully successful yet and so you can
see that cardiovascular disease is still the leading cause of death in the United States. We still have a lot of work to do. And when you look at cardiovascular disease
for the 62 million Americans who live in what are considered rural areas, their age adjusted
death rates from cardiovascular disease are higher than people who live in urban areas. And moreover, when you look at the rates of
cardiovascular disease, fortunately we’ve seen a steady decrease in death due to cardiovascular
disease for many years. But nationally that’s beginning to decline,
meaning that the rate of improvement is declining and we’re seeing that even more so in rural
parts of the country, and in fact for middle-aged white non-Hispanic adults in rural areas,
we’re actually seeing an increase in death from cardiovascular disease. So there are some concerning trends out there
and so certainly, the urgency here is here to address these issues. So why is that? if you look on the–the slide
where I sort of have this diagram which looks at the County Health Rankings model and it
goes through the different elements that build into community health. And so it–the base is sort of that physical
environment, so air and water quality housing and transportation, you know, this is critically
important. You know, there are–transportation is a major
issue and it’s not only long-distance as you see in rural areas in the West but it could
be shorter distances but where there’s just not good transportation in West Virginia is
a perfect example. You know, West Virginia not a very large state
but very long transport times for some patients to get to facilities to get health care. Then you can see social and economic factors
like education, employment. Access to care is a critical issue and I’m
going to get back to this in a moment. And then, challenges that a lot of our patients
are facing around higher rates of tobacco use in rural areas, we’re seeing high rates
of obesity if you look just in Appalachia among adolescents, they are two times as likely
to be obese and adolescents in–in other parts of the country. And then, ultimately what we look at is quality
of life and length of life, those are the main outcomes that the people care about. To just touch on the–the access to care and
the availability of care to individuals, you look the next slide, if you look at primary
care, I mean, you compare rural and urban settings you have about 40 health care providers
per 100,000 people in rural areas of primary care compared to about 50 in urban areas. So there’s a disparity in primary care and
that’s–that’s very important. And it’s not only are there enough providers,
but how do they get transportation and access to be able to get to those providers. But then when you look at specialists, as
I mentioned there are two components. There’s the primary care and then there’s
the escalation of specialty care, you see a tremendous discrepancy. So you’ve got about 30 specialists for a 100,000
and about 260 specialists per 100,000 in urban areas. So these are areas that we really need to
resolve. So lastly are just some solutions and, you
know, not necessarily have all of the solutions but these are some ideas that are out there. And so one is in keeping with the priorities
of the American Heart Association is universal health care coverage. So if people don’t have insurance and they
don’t have adequate insurance, they’re not able to pay for health care, they’re more
likely to avoid getting health care because it’s going to come with a huge bill. Two is access to care, we talked about primary
care and specialists but I think it’s also how is that built into a system of care. So, you know, we can go–we can stretch our
resources further if we have connections perhaps through telehealth or other relationships,
primary care is plugged into specialty centers, maybe a near mid-sized or larger cities and
so that we have coordination of care. Healthier communities around transportation,
availability of food similar to Dr. Moser’s comments on tobacco substance, dealing with
substance abuse. And then lastly is innovation and where this
is where the patient-centered outcomes research comes in and the important work of PCORI. The solution that’s going to work in West
Virginia may not be the same that’s going to work in rural Nevada. So we really need to understand what works
and in what communities and we need to engage the patients in that research to understand
what is the most appropriate approaches to deal with problems that individual communities
are facing. Thank you. Thank you so much Dr. Borden, that’s great. And great, thinking about again context, every–just
calling it rural, it’s–there’s a huge variety of rural conditions and contexts which affect
health and healthcare dramatically. So Maggie, tell us more. Thank you so much. Again, I really want to thank everybody for
being here and appreciate this opportunity for bringing attention to some of the tremendous
challenges in rural healthcare, rural healthcare delivery specifically and I want to build
a little bit on what Dr. Borden was saying. I’m with the National Rural Health Association. We represent sort of the really umbrella group
of really all that is rural. we represent rural patients, all different
types of rural providers be it from critical access hospitals, rural health clinics, community
health centers, individual physicians. The whole gamut of healthcare as well as–as
well as rural researchers. We were one of the first associations to really
advocate or research and–and the federal government to recognize the uniqueness, the
tremendous challenges of trying to deliver healthcare in rural communities and help get
the Federal Office of rural health policy started, we’re trying to get a world apartment
within the Centers for Disease Control as well, would love any help out here in trying
to–trying to make that happen. And let me tell you a little bit about some
of those challenges and why it’s so difficult in rural America. And I’ve been now with the National Health
Association for about ten years, worked on the hill for three different senators for
about ten years. And I’ve really seen some dramatic changes
that–that are not for the better. And when you look at it you’ve got, you know,
20 percent of this country’s population lives in rural America, yet they’re scattered over
95 percent of the landmass. Just that sheer factor that dislocation of
people trying to access care is difficult when you talk about other Geographic barriers,
limited roads, whether, mountains, rivers, whatever you can think of that–that rural
America gives you plus the difficulty of having transportation all compounds. But then when you look at the vulnerability
of rural populations, what do I mean by that? Rural Americans are per capita older, they’re
poor and they’re sicker. They are more dependent upon federal programs
such as Medicare and Medicaid than their urban counterparts. And when you look at some of the systemic
problems such as chronic poverty in rural America, areas of Appalachia, areas of Western
Kentucky where President Johnson over 50 years ago declared war on poverty in–in areas of
Kentucky, those are still the poorest counties in this country. We’ve come a long way but we still have a
long way to go in–in rural America. That’s why it’s so absolutely critical that
we do research to be able to tell the stories of what’s going on in rural America to help
you better do your job. I want to highlight some of those issues. Let’s talk about some of the big issues, workforce
shortages. We’ve always had workforce shortages in rural
America and as if we were just joking, since there’s been a rural America, we’ve got 20
percent of the population, you have only 9 percent percent of the physicians practicing
in rural America. If you look at mental health shortages, dental
health shortages, those figures are just absolutely through the roof. Dr. Borden talked about specialty care that’s
also incredibly challenging. And then, when you look at some of the wonderful
recent studies done that really highlight the vulnerable populations, when I say they’re
sicker, the Centers for Disease Control came out with some very powerful studies at the
beginning of last year that really highlighted the disparities in rural America. Not only that, they were able to outline the
difference–the difference in growing mortality rate discrepancies between rural and urban
America. It used to be you live longer when you’re
in rural America, you lived a healthier lifestyle. That is no longer the story and your life
expectancy can be as high as 10 percent at 10 years in some parts of rural America. So many issues are–are compounding that. Poverty rates, access to proper nutrition,
access to health care. Certainly, there’s also as I mentioned the
growing–growing poverty. Much of rural America still has not been able
to overcome really the great recession. We are blessed to have such low and unemployment
rates nationally and growing economic conditions. However, much of rural America is still left
behind, and if you look at the studies of how unemployment rate is still tremendously
high in rural America and you look at many of the great research that done–that actually
ties your mortality rate to your zip code and the financial wealth of a particular area,
it’s absolutely startling. Where we are right now and in some of the
suburbs of Maryland in West Virginia and in the bay area of San Francisco, you have the
highest life expectancies. You don’t in part of the deep south and in
Appalachia. That’s the disparities that we really need
to fight to overcome. And really, one of the big issues that we’re
really trying to highlight and there’s some great studies and research going on. And I’ll talk a little bit about the end about
the great work that the Federal Office of rural policy is doing with the many research
branches that they have, but is really the rural hospital closure crisis. What we’re seeing in the last decade is a
tremendous escalation of rural hospitals that are closing across the community, hospitals
that are the primary care hub of rural communities across the country. What happens when these hospital closes? Almost always, the physicians are Hospital
based. If that Hospital closes, the physician leaves,
the nurses leave, the pharmacist leave. We’re seeing 20 percent of that rural economy
instantly vanish. What happens when a–when a hospital closes
in Washington DC? Hopefully, GW will never close, it’s a fantastic
facility. If God forbid it does, what’s going to happen? Probably, we’re going to build another hospital
or some of the many other wonderful facilities in this area will absorb the patient overload. That does not happen in rural America. So what we see as a loss of these hospitals
is an additional economic decline in rural communities and in a tremendous health decline
in these communities as well. So again, I want to thank the researchers
who are looking into these issues of health disparities, of financial disparities, of
what the difference in expansion of Medicaid can or can’t mean in a lot of these rural
communities. That gives us the power, the tool so we can
share that information to you. And really, there’s been so much great work
lately that has drawn headlines that also can–can further build on this issue and really–really
make it more visible to–to your constituents as well. Right Thank You Maggie and thank you to Will
and Debra as well. So we’ve–we’ve put a lot of facts on the
table and I want to remind folks that we wouldn’t know those facts if it weren’t for research. So again, we’re talking about research today
and specifically patient-centered outcomes research. And so, but I want to remind folks that research
helps us first know the scope of the problem but importantly, in the context of patient-centered
outcomes research, it helps us figure out how to address the problem, how to build interventions
like Dr. Moser’s that actually help to fix the–the data that we have been presenting. So on that note, I wanted to follow up with
Dr. Moser on one question which is, you know, so PCORI likes to say that it’s and–and Senator
Van Hollen talked about that it’s an innovative approach to research, how the Institute was
established. And so, and–and–and I know that my colleagues
at PCORI call, you know, like to say that it’s research done differently. So I’d like to hear from you and–and anybody
out, both Bill and Maggie who might want to comment. What does that mean? what did you learn from doing this kind of
research that was different from all other kinds of research? Well, it–it was a wonderful opportunity to
really be–to really be sort of pushed into this way of thinking about really involving
patients. So researchers don’t traditionally involve
patients and without PCORI, we probably wouldn’t think that way. And now, all of these organizations are (INAUDIBLE),
you go and you actually now hear patients speaking where you never would hear that before
in a big annual meeting. And so it was really this amazing opportunity
to finally discover what the people were about in Appalachia Kentucky and what they really
thought about their health, and were they instead of us deciding what they thought about
their health and deciding, people tend to stereotype and a lot of researchers think
that people in Appalachia are really fatalistic. They don’t really care about their health. They think their health is going to go badly
and–and they’re not going to do anything about it. We’ve actually had physicians tell us that
in that area, they don’t really care they’re not going to do anything. But if you talk to people, you actually discover
they care deeply–they care deeply about the image of the community, they care deeply about
their children and their grandchildren. They’re especially interested in their legacy
and how the legacy can go so badly if we don’t address the issues that are at the heart of
the problems today. And so we really learned that people in this
area were great at coming up with solutions to their own problems, if anybody would ever
ask them and help them with the resources. And so, this actually was probably one of
the most successful research projects I’ve ever done where it was easier to recruit people
and we’re talking about poor, less educated, hard-to-reach people who would never participate
in a project, otherwise in a research project. So they really flocked to us and actually
keep asking about our projects and we’ve implemented them into practice. And so we can actually send people to the
areas where this, you know, project is implemented. But it really shows you the strength of research
when the people who are affected are really deeply involved. Oh, great point. Either of you want to build on that? Yeah, I think, you know, Bill and Debra ‘s
comments, I would just say that the type of research that she’s done and that PCORI supports,
this is actionable research. This is research that is then ready to be
put in place and, you know, Debra and other PCORI funded researchers, when they’re engaging
the community, the community feels ownership then for that project. And so, when the results come out they say
this is our day, this is our project and so it’s–it’s set up and–and ready to go to
be carried on and be implemented and be an intervention that hopefully then improves
health outcomes. And just to–to–just be another add-on, it
makes all the sense in the world and it’s really sort of surprising it hasn’t been more
patient-centered in the past because that’s really how you understand the problems, the
layer of problems in rural America where healthcare is tied to lack of transportation which is
tied to maybe difficulty in accessing employment or difficulty in seeking mental health care,
because they know everybody in the community and didn’t want the red pickup truck recognize
outside of the mental health clinic. It’s been very important in getting the stories
of rural women who are losing access to obstetric services and understanding the hardships that
they faced. 1985, only 24 percent of rural counties lacked
obstetric services. Today, 54 percent. We need to hear those women’s story and understand
and try to get them the obstetric needs that they desperately need. And that last statistic is really shocking
particularly and probably contributory to the rise in maternal mortality in this country
and serious maternal morbidity. So that’s just another example building on
the heart health examples that you heard of of just how critical and–and–and really
how daunting some of these challenges are. But I was very impressed Dr. Borden by not
only your study, but what we like to call the effect size. The difference between your control group
and the intervention, you know, that’s nice but often these behavioral interventions after
three months, it washes out, people go back, it’s hard, right? For all of us to change our behavior, you
know, when we’re presented with cookies, right? But that sustained impact at one year is really
encouraging and again to the point that was made, when you involve patients in research
it’s not just about talking to them during the research, it’s actually talking to them
before the research. They help you frame the question; they help
you design the study; they help you when things maybe don’t go according to plan, they can
help troubleshoot and then took Dr. Borden’s point. When the results come out, there’s ownership,
there’s buy-in, there’s a desire to implement. And so, this is something we’ve learned because
implementation of research findings. Well, we know so much from research, we are
not implementing that. now, granted there are lots more questions
about what does work again with that specificity of context in rural areas, but implementing
the research, we already have findings, you know, knowledge of is another critical role
that PCORI plays in funding the dissemination and implementation of their findings. So, I think we’re now at time and I need to
open it up to the floor. I have more questions, so that gives you a
chance to warm up. We have 15 minutes left for additional Q&A. So I’d like to encourage you to just raise
your hand and if I–when I call on you to introduce yourself and where you’re from,
don’t be shy, all right. I’m going to ask another question. So I’d like to ask Bill because you alluded
to this in terms of patient-centered outcomes research. How have you seen your ability as a clinician
caring for patients whether here or, you know, or patients referred from rural areas to take
PCORI findings, you said they were actionable. How do you as a clinician find research use
it? What do you think is being done differently
today than just, you know, a decade ago? Absolutely. I mean I think, you know, there’s a–there’s
a lot of work out there at–certainly there’s the science on, you know, how do we, you know,
prevent heart attacks with, you know, new medications or understanding that sort of,
you know, fundamental science? But there’s also so much of this which is
when Lisa mentioned this sort of the implementation science how do we put this into action? And, you know, one of the–the sets of research
that I’ve found particularly compelling is around the use of community health workers
which these are people in the community so in–in, you know, rural communities who are
not medically trained, they’re not, you know, they’re not doctors, nurses, paramedics, and
they usually go through some sort of brief training to familiarize themselves with the–the
skills but they’re able to connect because they’re working with their family, they’re
working with their friends they’re working with those in their community. And they can do things like health promotion,
so educating on diabetes or high blood pressure, they can do connecting to social services
or helping people find food services or transportation. And then, they can serve a really important
role as a navigator to say look, you may be in a community where, you know, there’s a
limited set of primary care providers, but here’s how you get connected into them and
if you do need to go somewhere else, here’s how you can do that. And so, community health workers in a variety
of patient centered research studies have been shown to be effective and I think that’s
something that nationwide in–in both rural and urban areas is being put into practice. Great, Maggie. I just really want to allow the echo the importance
of–of getting that training locally with community health aides, community health workers,
they are doing fantastic things. Why does it work? It is so difficult to recruit and train and
retain people in many parts of rural America. The best thing you can possibly do is elevate
and educate the people who are there living and loving that community and people who trust
them in the community. It is very difficult for certain parts of
population to bring in folks from the outside and say this is what you need to do. If we can grow their own and–and educate
them, hook them up and so easy to do now with so many aspects of telehealth and so much
easier to monitor and get results and communication with patients and have that through your needs
through very simple technology, FaceTime for–for example. I mean, there’s–there’s so many great things
that can be done. But it is absolutely critical for so many
parts of the population to grow those community health aides, the number one meets some of
those workforce shortages but to really move the bar and change attitudes in rural America. Especially important in a lot of Native American
communities, we watch this grow very strongly in areas of Alaska that are very isolated,
there’s no roads in or out of these communities, just the issue of trust in advice in health
care is very important through the Community Health Aide program. Great point yes, Bill. I’m going to do one–one follow-up and this
is as strong an advocate as I am for community health workers, I don’t want to leave the
impression that we’ll say substitute a physician for a community health worker in rural areas. You know, we’re talking about access to quality
care and we’re trying to be creative and innovative in terms of our resources but that’s why I
think the systems of care is really important. So if there’s a community health worker that
that community health worker, he or she is under the direction of a nurse, under the
direction of the physician tied into a network. And these are innovative care approaches where
I do believe you can get, you know, equal and sometimes better quality of care. So I just wanted to make clear that we’re
not trying to trade out a medical professional for someone a–a–a lay community health worker. And (INAUDIBLE) certainly in agreement with
that. It’s just so important to get people access
to care initially so then–so then they can access the higher levels of care. Yeah, and Debra did you want to just– I wanted to mention that in our project all
the projects that we do now we actually use community health workers through our nurses
who are trained nurses and lay community health workers and they are–so it does help. It’s–it’s actually this cool side, you know,
effect of the research that we do that does have an impact on–on workforce issues. And really, within the community–so I’m from
California. When I go, you know, to Appalachia to talk
to people and they said they learn that, they–I mean, I’ve trusted now and they accept me
but initially, it’s difficult. And people want to know that you really understand
them and so we always. And that’s part of the–the impetus of PCORI
is to employ–is to work with the people–the stakeholders who were in the area and that–that’s
why I think our projects have been so successful because we never employed anybody outside
of the area. Everybody who works on the project is from
the area and that just helped so much that was integral to the success of this project
and to any project, I think. It’s easy in urban areas but it’s something
that’s really overlooked in rural areas. Again, I want to encourage folks to ask questions. Yes, a brave hand has gone up there. Please stand up and introduce yourself. QUESTION: (OFF-MIC) I could give you a few examples of how this
sort of the project that we did which is just using people–educated people to engage in
a culturally appropriate intervention that’s not just education. So I–I really want to emphasize so teaching
people is–is necessary, it’s never sufficient. You have to teach people to overcome the barriers,
you have to give people the resources or help them find the resources and you have to give
them the skills. But ultimately, now I forgot what I was gonna
say. I can’t believe that. Oh, okay, so part of that we really worked
with people in the Center for rural health for excellence which is–are available in
actually a lot of rural areas. And it’s a state-funded institution, it’s
also funded with the University of Kentucky. But now that–and they deliver health care
to indigent people. Our project was so successful and–and sustained
teaching people to take care of themselves and do lifestyle modification which is really
good self-care over the long term that it’s embedded now into the–the services that they
provide. So the fire department has to have yearly
health training, that was part of their–their rules, and they took our project and that
was part of the–that met the requirement for their yearly training. The same thing with some of the other law
enforcement areas and local businesses. So we had local businesses who took our project
had sent people to the project which can be adopted anywhere and gave them a reduced rate
in their health insurance. But we–the senior service–the Senior Center
now offers that project; the agricultural centers offer that project. So those sorts of interventions can be embedded
in–in traditional clinical practice but also lots of other places where people seek care
and can get good care. Thank you, those are great examples. And I want to emphasize again patient-centered
outcomes research as you heard, not just engages patients and stakeholders throughout lifecycle
of research, but it’s also about comparing different interventions that comparative clinical
effectiveness component. And that’s really unique to what PCORI is
funding. And so, you have several examples outside
on the table of specific studies but some that come to mind for me is again comparing
an inpatient intervention to an outpatient intervention or a drug with this kind of wraparound
support and education and case management versus another intervention. Because again, it’s not one-size-fits-all. We hear a lot of talk about precision medicine. Well, it’s not just about the drug or the
genome it’s also about the set of services that individual patients given their social
context, given their needs and particularly in rural communities, how do you address those
needs compared to another way to really improve their health outcomes. And we’ve touched us briefly on telehealth. But again, I think that there’s an opportunity
to compare different types of telehealth, not just for cardiovascular disease but of
course again with our opioid epidemic and our mental health crises in different communities
and the suicide rates going up. Telemental health, eco projects, other interventions
understanding which of these work best for which populations. And again that patient-centered research that
compares different interventions. So we just have a couple minutes left. So I actually I’ve just been given the signal
like the hook. I’m supposed to wrap up now. So I won’t take any more questions, but I
really want to encourage everybody to come up to our fabulous speakers if you have additional
questions. Most importantly in wrapping up, I want to
thank our three speakers and Research!America, the American Heart Association, Nat–National
Rural Health Association and anybody else I’ve forgotten to mention who has helped make
today possible particularly all the staff who put it together. so with that I want to turn it back over to
Jenny Luray for the final word. Thank you and what a great panel, thank you
so much. We’ll have a round of applause in a minute. Please check out Research!America.org. The materials from today will be available
electronically. We have wonderful public opinion polling that
may be helpful to your members and your organizations and it’s very up-to-date. We look at public opinion toward different
types of research and different types of healthcare interventions. We also have an investment report that we
update annually that looks at federally funded and private investment in medical research
which is can be quite helpful. Now, for our last bit of welcome and words,
I’m going to turn it over to Dana Richter with Senator Capito’s office, there’s Dana. Dana has been working very closely with Alissa
(SP) and Senator Van Hollen’s office. And not only is her boss a leader on PCORI
and many other healthcare issues but so is Dana herself, thank you. No, I also just want to echo the thanks to
Research!America and PCORI for sponsoring this today, this was amazing. I know my boss wishes–wishes she could be
here because so much of what you said whether it’s the fact that the populations were older,
sicker, and poorer and so much Dr. Moser of what you said about Kentucky applies to West
Virginia as well. She’s thrilled to work with senators Van Hollen,
Cassidy, and Warner on this. I’ve been working with their staffs. We really hope to have a reauthorization bill
released soon. One of the things that I encourage all of
you, Lisa had mentioned that there are some examples outside on some of the projects that
are occurring in different states. If your state’s not there, look–go to the
PCORI website because there is amazing information. We are–I know in West Virginia and this just
dovetails really nicely with what you’re just saying about mental health. We’re thrilled that we have a great project
going on right now with West Virginia University and they’re looking at different remote therapies
for depression, and this is something unfortunately West Virginia. We’re certainly not proud of this but we’re
42nd of the 50 states in access to mental health care. So something that can reach populations that
otherwise aren’t able to get the full range of services currently is huge for us. So take a look at the PCORI website to see
what’s going on in your state and make sure your bosses know about that because I know
we, you know, we’re very excited. We also have a very excited–the head of this
project was in talking to us and he is so excited about this and I know your Senators
will be equally excited to hear what’s going on in this day. As I said I encourage you because we will
be doing the reauthorization. My boss shares the desire with Senator Van
Hollen to get this done before the authorization runs out at the end of the fiscal year. We have a great bipartisan team working on
this. So I think the message here is stay tuned,
get your information together. And I just thank our speakers because I think
they did a great job of showing exactly what this is doing in rural America and other places. Thanks Dana. So let’s just give a round of applause to
our panel and thank you. (APPLAUSE)
Thank you all for joining us today.

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