From the High Plains to the Bright Lights…… and back.
Listening to the community- the farmers and ranchers, schoolteachers and students. “This isn’t just about me as a researcher and what I want, it’s what the community wants.”
Jack Westfall is a family doctor and researcher. He completed his MD and MPH at the University of Kansas School of Medicine, an internship in hospital medicine in Wichita, Kansas, and his Family Medicine Residency at the University of Colorado Rose Family Medicine Program. He spent most of his career at the University of Colorado, while practising rural family medicine in a small town in eastern Colorado, about 100 miles from Denver where they started a practice-based research network. His focus has been on rural health and community engagement and later public health agency work in California and health policy in Washington, DC.
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“We have a saying, and we wrote it down. It says something like this- you go talk to some people, and you listen to them, and then you think about that, and then you go and you listen to them again- The typical model has been helicoptering in researchers in such a way that they come in, they listen once and the first time you come, community members tend to tell you what they think you want to hear.”
You’ve had a fascinating career, from the high plains to the big cities. Tell us about your career trajectory.
Jack Westfall. I’m a family doctor. I grew up in rural Colorado, went to medical school at the University of Kansas and then back to Colorado for residency, joined the faculty, was in the residency and really got a hankering to go back to rural practice.
I talked to my family doctor from childhood, Dr Marc Ringel, and a few rural friends and they said “Well, do. Come practice half time in rural.” So I started doing that. And then one of my mentors, Dr Larry Green, who had been working in a Practice Based Research Network, a PBRN, said maybe try a rural PBRN. And so we started the High Plains Research Network in 1997. We started with six counties and its grown to 16 counties. It’s essentially a practice and community based, geographic Practice Based Research Network that includes 16 counties, stretches 250 or 300 miles, end to end and its 180 miles wide. It includes 55 primary care practices who all participate, 16 small critical access hospitals, anywhere from 5 to 10 beds, and a couple of larger hospitals with 30 to 40 beds. It’s led by community members.
Participatory research has been a part of our culture and our thinking since early on. First, we engaged the practices but we were missing a voice. Around 2003, we realized that, while we were getting good information from the practices, what we really needed was the voice from the community. So, we started a community advisory council of farmers and ranchers, schoolteachers and students, and they’ve been with us for 20 years now. It started in 2004 and they’re still with us, and several have been there the whole 20 years. Linda Zittleman, HPRN researcher and co-Director managed the care and feeding of our practices and community members, communicating regularly and building our trustworthy relationships. That grew because the university got a big NIH grant, a Clinical Translational Science Award (CTSA) and it needed to have some sort of community engagement. We added in several of Colorado’s practice based research networks, and I had the good fortune of being the director of the Community Engagement Core for our CTSA for a number of years where we were able to grow the engagement out in the community using community liaisons. We had some in rural and we had some in urban, we had some on the eastern slope and the western slope.
I also was the associate dean for rural health, because rural is in my blood, that’s one of my things. I grew up in a small town, I worked in a small town and I really appreciate the hard work, and I continue to work a day a week in my hometown, Yuma Colorado, a town of 2000 people with a small hospital and clinic.
Then I got lured away to Washington, D.C. to do some policy work…
DMacA: Let me stop you there because I’m really interested in this community engagement. Tell us how the community engagement works. How do you get the people to contribute? So, how do you do community engagement?
JW: We have a saying, and we wrote it down. It says something like this- you go talk to some people, and you listen to them, and then you think about that, and then you go and you listen to them again- The typical model has been helicoptering in researchers in such a way that they come in, they listen once and the first time you come, community members tend to tell you what they think you want to hear.
For example if you ask what do you need? “ We need better health care access. We need more primary care. We need cheaper drugs.” But then when you go back and listen again, start having meals, start spending time, building relationships, then you learn what they really need. They need transportation. They need community support. They need jobs.
They also need health care. But they think of health care in a very integrated sense. That includes both the clinic and the hospital, but it also includes what’s going on out in the community. And so, in our saying, in our little one paragraph message, there’s a- listen again a third time. It’s about listening, building relationships, and then the big crucial part, sharing power, money, priorities. This isn’t just about me as a researcher and what I want, it’s what the community wants.
We have another saying. We were in a meeting once, and this was early on in the first two or three years and we were going through some paperwork and thinking about data use agreements, and who owned the data, more paperwork, and conflicts of interest. And the community members were getting agitated. It was not going well. And Jack was on a roll – I was preaching the gospel of data use. And finally, this old farmer, Garry Haynes, stood up and he crossed his arms, and he said, “okay, Westfall, here’s the deal. As long as this work is about the community, about rural Colorado and helps the people in my community, I’ll stay involved. But as soon as this becomes about you, or the university, or some paper, I’m out of here.” And everybody stood up. They all clapped and we put all the paper away.
And we now go by a principle that, 17 years later, we still call out the “Garry Haynes ethic”- We make decisions based on what the community wants.
Ann Macaulay who we all met at NAPCRG, came out to rural Colorado and said to the community members: “I’m going to say this in front of Jack-the community is always right.” So we try to live by that. And every year or so we look around and ask ourselves, who else isn’t at the table? Who do we need?
Community engagement is key to the High Plains Research Network. It’s key to my work. I can’t imagine doing work without asking community members and patients their experiences and for their expertise.
The “Garry Haynes ethic”
“Okay, Westfall, here’s the deal. As long as this work is about the community, about rural Colorado and helps the people in my community, I’ll stay involved. But as soon as this becomes about you, or the university, or some paper, I’m out of here.”
Garry Haynes
DMacA: So how does that translate into the research directly? Do you go to the community for ideas? Do you float the ideas with the community? How does that work in practice?
JW: It’s both of those. We’ve had a couple of strategic planning sessions and we learn about what’s going on in rural Colorado, what are the priorities, what are the health conditions? We listen to people that have data and people who have stories. Data and stories together are fantastic. And then the group comes up with a list of their top ten or 12 priorities. For example, we want to talk about asthma, or COPD, or we want to talk about mental health. But then sometimes a funder might say- we want to fund something on colon cancer prevention. Then we would go to the community and say – the Center for Disease Control in the United States has a new grant for rural colon cancer prevention- what do you think? If they say, no, we’re not for that, then we would move on. But sometimes they say, yeah, that’s awesome, we’d love to do that. So, we have a combination of ideas that come up through the community, ideas that come up from the practices and clinicians eg diabetes and hypertension and vitamin D deficiency, and then things that come from the funders that we vet through the patients and the community members. So for instance, we did a project on colon cancer prevention that was funded by the Center for Disease Control, and it was quite fun. And the community named it the ‘Got Polyps?’campaign and they produced a lot of cool materials. We completed that one and they said, okay, that’s awesome. Now, asthma is a huge issue and lots of young families have kids with asthma and they don’t know what to do, and we have young people who stop doing their sports or their agricultural stuff because they have asthma. What can we do about asthma? We then spent a year or so learning about asthma and finding a grant. And we had over 700 community members participate in the rollout through the community colleges, through high schools, through the radio, through all sorts of venues where we got the word out about asthma using local community voices. And those messages were identical to the messages that were in the clinics so there wasn’t this disconnect between what was going on in the community and in the practices. All of that was integrated.
That’s one of the things that the High Plains Research Network and the Community Advisory Council have taught me: If you intervene in the practice, that may be helpful. But, if community members and patients don’t understand the same language, it’s only partially useful. Same, if you create messages for public health, but you don’t get those messages into the practice, when the patients go into their practice, they may hear something different. You really have to integrate those.
DMacA: That’s something I’d like to ask you about because it really caught my imagination- the language you use in your research. Talk to me about colorectal screening and translating that into practical language.
JW: When we did the colorectal cancer screening project, the title given by the CDC was ‘Improving prevention for colorectal cancer screening amongst Hispanic and non-Hispanic males and females in rural communities.’ With that title our community members were, like, “What the heck is that? What’s screening. And do we have to use the word rectal. Can we just say colon?” So they spent a half day, 4 hours, learning all about colon cancer and then they decided to change the words. They said, “…screening that may mean something to you, but that doesn’t mean anything to us. Are you talking about doing a test, like a blood test or a colonoscopy, some sort of test? Can we just call it testing? And by the way, let’s just call it colon.” They changed the name to “Testing to prevent colon cancer” and that was a game changer. People suddenly started accessing these messages because it was using common language, locally relevant, actionable messages: Go talk to your practice. Go talk to your primary care clinician about this. And so then they said, well, that worked so well with colon cancer, let’s do it with the asthma. And they did the same thing with asthma by translating complex guidelines from the National Lung Association into something that was meaningful and relevant to them.
DMacA: Let me bring you back to the bright lights of the city, because you did some further work centrally.
JW: My wife’s a neurologist. She worked at the university and at the VA, and we raised our kids in Denver. I always did my clinical work in rural practice, but we lived in Denver. When I was at the university, which is an urban university, I became the director of the Clinical Translational Science and Community Engagement Core. I also was working with a lot of faculty doing health service research. The urban aspect was always interesting, but only in as much as we could engage the communities in urban areas as well. There are a lot of geographic, racial, ethnic, LGBTQ communities within Denver and the metro area that are important to include in any of the work we do, that all have various needs and messages and constructs around the health care issues they face. We were able to expand the stuff we’d done in rural Colorado and engage urban communities as well. Once I started doing health service research and did a little bit of policy work, I started flirting with the policy world. And we ran off to Washington DC for a few years to do some policy work. That was probably more hubris than anything. But we spent three years there. It was tough, the weather was tough, the job was tough. And we felt the call of Colorado and my wife’s parents were aging. And so we moved back to Colorado
DMacA: Let me ask about that policy work, because I find that quite interesting as well. You worked at the Robert Graham Center and you worked on quality. Tell me about that.
JW: The work with Robert Graham Center was fascinating because the goal was to create and curate evidence that informed policies that support family medicine and primary care. When I went to the Graham Center, I thought the Graham Center was a policy center. It’s really not. It’s an evidence center. It’s a data center. We create evidence to inform policies. And there are other people who do the policy work. And that was a real important lesson to think about in terms of what is primary care research? Do we do policy or can we create and curate evidence to inform policy?
Years ago, there were some studies that came out that showed family doctors didn’t have as high a “quality” for heart attacks. But, when you actually read the study, they excluded so many patients that family doctors take care of that you couldn’t really tell. But there is an editorial opinion by many of the East Coast journals that family medicine is not as smart or as good as some of the other specialties. So “quality” is really tough. And it’s one of those paradoxes where for many individual diseases, diabetes, heart disease, lipid control, family doctors may have lower “quality scores” for individual disorder or disease or condition but when you look at the health overall, patients live longer, and they cost less. They’re happier than if taken care of solely by specialists. There’s a really nice study that came out a number of years ago that we tried to replicate over and over and try to find places to do this. It showed that the best outcomes for a heart attack were in patients who were cared for by both a primary care clinician and a cardiologist. They had better one year survival than patients cared for by just the cardiologist or just the family doctor. And I think that really gets at the core of what family medicine does. We take care of people over time. We know some of the competing demands.
We did quite a bit of work in the High Plains on competing demands- patients with diabetes, but who also had COPD and hypertension. How do you take into consideration each of the various complex conditions rather than just measure one, two, or three? That quality is real important. I like Barbara Starfield’s work on the four C’s: Continuity, Comprehensiveness, Collaboration, first Contact access. And I think that continuity and comprehensiveness are two of those measures that the Graham Center is still studying, as is the Center for Professionalism and Value at the ABFM.
They’re studying these because I think that comprehensive care and continuity are really crucial to understanding that paradox, because we know so much about our patients and we learn about their values and we learn about what matters to them in such a way that they might have a rich, thriving life, but they also have a success
“… this is the day to day work of family medicine…They see a human in a context of a family or with a significant other, or a job, or isolated and all of those conditions, along with the social conditions, personal conditions, and values impact their outcomes.”
DMacA: You’ve used a line that relates to those issues of quality, and that is – patients are more complex than a single guideline.
JW: Yeah. I crave the day when funding agencies and academic researchers are required to consider this in everything they do because this is the day to day work of family medicine. They don’t just see a diabetic, they don’t just see a hypertensive or an asthmatic. They see a human in a context of a family or with a significant other, or a job, or isolated and all of those conditions, along with the social conditions, personal conditions, and values impact their outcomes.
“What do you want out of the next five, ten, 20, 30 years of your life? What do you want to be able to do?”
And what a valuable question to ask because this gets at the complexity and the treatment in an individual rather than as a disease. It’s “Hey, Mr. Jones, you have these three conditions. Here’s the treatment options for each of those. What do you want out of the next ten years of your life? “
I had an 82 year old last week who said, “You know what, Jack? I may have to do something about my knees because it hurts to get into the tractor. I want to be able to continue to drive a tractor.” Age 82 and still driving a tractor. But I have others who say, “you know, all I want to do is be able to pick up my grandkids. I’m done working, and I want to be able to go hang out with my grandkids. I want to be able to go to a football game and climb up the stairs to see my grandson play quarterback.” So that complexity is so strongly relevant at the individual level rather than as a set of diseases or a set of conditions.
DMacA: That’s the most elegant description I’ve heard in practical terms of what everybody uses the jargon for patient centered outcome. Jack, its been just a pleasure talking to you. Thank you very much indeed.
JW: I would like to thank all the clinicians and practices in the HPRN, the HPRN research team (Linda Zittleman, Christin Sutter, Kristen Curcija, Jen Ancona, Sadie Fritzler, Marc Ringel, Susan Gale) and the community members in the HPRN C.A.C. for making all of this possible. Ashley Espinoza, Mike Hernandez, Maret Felzien, Ned Norman, Mary Rodriquez, Norah Sanchez, Sergio Sanchez, Kathy Winkelman, Steve Winkelman, Garry Haynes, Connie Haynes, Shirley Cowart, JC Carrica, Fred Crawford, Chris Bennett, Kaitlyn Bennett. And the hundreds of other community members who have participated in individual studies, projects, and programs. Thank you.
See: High Plains Research Network YouTube Channel
More details on the High Plains Research Network
