{"@context":"http://iiif.io/api/presentation/3/context.json","id":"https://centerforthehistoryoffamilymedicine.aviaryplatform.com/iiif/3t9d50ht0f/manifest","type":"Manifest","label":{"en":["Ms. Diane Stollenwerk"]},"logo":"https://d9jk7wjtjpu5g.cloudfront.net/organizations/logo_images/000/000/246/original/CenterForHistoryFamilyMedicine_2c_RGB.png?1773344256","metadata":[{"label":{"en":["Rights Statement"]},"value":{"en":["\u003cp\u003eThis item is protected by U.S. copyright and related rights. It is being made available by the Center for the History of Family Medicine as its rights-holder for noncommercial use, including sharing and adapting the work. No permission is required for noncommercial use so long as attribution is provided. All other uses require permission from the Center for the History of Family Medicine.  Disclaimer:  The views presented in this broadcast are the speaker’s own and do not represent those of CHFM or the AAFP Foundation. The information presented is for general, educational, or entertainment purposes and should not be considered legal, health, financial, or other advice. \u003c/p\u003e"]}},{"label":{"en":["Description"]},"value":{"en":["\u003cp\u003eMs. Stollenwerk has a unique background in helping minority communities such as LGBT communities in Baltimore. Her passion is helping these underprivileged groups and getting to understand health care on a deeper level. Her non-profit is one of the leaders in helping to better understand the bigger picture in health care. It aims to go directly to communities in the Baltimore area, and beyond, to meet with patients face-to-face and learn more about what their experiences were as patients in the health care system. This kind of work was inspired by her previous job at NQS. She has a very clear vision of where she hopes the health care system will go in the future, as well as a plea for more infrastructure and funding to aid in her research with less privileged communities like the LGBT community. \u003c/p\u003e (summary)"]}},{"label":{"en":["Date"]},"value":{"en":["2019-01-07 (created)"]}},{"label":{"en":["Type"]},"value":{"en":["oral history"]}},{"label":{"en":["Agent"]},"value":{"en":["Dr. Herbert Young (Interviewer)"]}},{"label":{"en":["Format"]},"value":{"en":["audio file"]}},{"label":{"en":["Keyword"]},"value":{"en":["American Academy of Family Physicians","Family Medicine for America's Health","family medicine","family physician","Medical Research","LGBTQ"]}},{"label":{"en":["Subject"]},"value":{"en":["Diane Stollenwerk, MPP (personal name)"]}},{"label":{"en":["Language"]},"value":{"en":["English (primary)"]}}],"summary":{"en":["\u003cp\u003eMs. Stollenwerk has a unique background in helping minority communities such as LGBT communities in Baltimore. Her passion is helping these underprivileged groups and getting to understand health care on a deeper level. Her non-profit is one of the leaders in helping to better understand the bigger picture in health care. It aims to go directly to communities in the Baltimore area, and beyond, to meet with patients face-to-face and learn more about what their experiences were as patients in the health care system. This kind of work was inspired by her previous job at NQS. She has a very clear vision of where she hopes the health care system will go in the future, as well as a plea for more infrastructure and funding to aid in her research with less privileged communities like the LGBT community.\u0026nbsp;\u003c/p\u003e"]},"requiredStatement":{"label":{"en":["Attribution"]},"value":{"en":["\u003cp\u003eThis item is protected by U.S. copyright and related rights. It is being made available by the Center for the History of Family Medicine as its rights-holder for noncommercial use, including sharing and adapting the work. No permission is required for noncommercial use so long as attribution is provided. All other uses require permission from the Center for the History of Family Medicine. \u0026nbsp;Disclaimer: \u0026nbsp;The views presented in this broadcast are the speaker\u0026rsquo;s own and do not represent those of CHFM or the AAFP Foundation. The information presented is for general, educational, or entertainment purposes and should not be considered legal, health, financial, or other advice.\u0026nbsp;\u003c/p\u003e"]}},"provider":[{"id":"https://centerforthehistoryoffamilymedicine.aviaryplatform.com/aboutus","type":"Agent","label":{"en":["Center for the History of Family Medicine"]},"homepage":[{"id":"https://centerforthehistoryoffamilymedicine.aviaryplatform.com/","type":"Text","label":{"en":["Center for the History of Family Medicine"]},"format":"text/html"}],"logo":[{"id":"https://d9jk7wjtjpu5g.cloudfront.net/organizations/logo_images/000/000/246/original/CenterForHistoryFamilyMedicine_2c_RGB.png?1773344256","type":"Image"}]}],"thumbnail":[{"id":"https://d9jk7wjtjpu5g.cloudfront.net/public/images/audio-default.png","type":"Image","format":"image/png"}],"items":[{"id":"https://centerforthehistoryoffamilymedicine.aviaryplatform.com/collections/3491/collection_resources/162278/file/295068","type":"Canvas","label":{"en":["Media File 1 of 2 - StollenwerkDiane_01_Access.mp3"]},"duration":3600.7299,"width":640,"height":360,"thumbnail":[{"id":"https://d9jk7wjtjpu5g.cloudfront.net/public/images/audio-default.png","type":"Image","format":"image/png"}],"items":[{"id":"https://centerforthehistoryoffamilymedicine.aviaryplatform.com/collections/3491/collection_resources/162278/file/295068/content/1","type":"AnnotationPage","items":[{"id":"https://centerforthehistoryoffamilymedicine.aviaryplatform.com/collections/3491/collection_resources/162278/file/295068/content/1/annotation/1","type":"Annotation","motivation":"painting","body":{"id":"https://aviary-p-centerforthehistoryoffamilymedicine.s3.wasabisys.com/collection_resource_files/resource_files/000/295/068/original/StollenwerkDiane_01_Access.mp3?1760560130","type":"Audio","format":"audio/mpeg","duration":3600.7299,"width":640,"height":360},"target":"https://centerforthehistoryoffamilymedicine.aviaryplatform.com/collections/3491/collection_resources/162278/file/295068","metadata":[]}]}],"annotations":[{"id":"https://centerforthehistoryoffamilymedicine.aviaryplatform.com/collections/3491/collection_resources/162278/file/295068/transcript/85362","type":"AnnotationPage","label":{"en":["Dr. Diane Stollenwerk Interview Transcript [Transcript]"]},"items":[{"id":"https://centerforthehistoryoffamilymedicine.aviaryplatform.com/collections/3491/collection_resources/162278/file/295068/transcript/85362/annotation/1","type":"Annotation","motivation":"transcribing","body":{"type":"TextualBody","value":"Tape 1, side 1\n\nDr. Young: This is side 1 of tape 1 of the Oral History of Diane Stollenwerk, a member of the board of Family Medicine for America’s Health. We are recording this on January 7, 2019. I’m Dr. Herbert Young, a volunteer at the Center for the History of Family Medicine. \n\nMay we have your permission to record this interview?\n\nMs. Stollenwerk: Yes.\n\nDr. Young: And could you please give your name in full?\n\nMs. Stollenwerk: My name is Diane Louise Stollenwerk.\n\nDr. Young: And your present title and position or positions?\n\nMs. Stollenwerk: I am president of a small consulting firm called Stollenwerk in addition to being involved in several boards. But my primary position is president of a consulting firm.\n\nDr. Young: And in terms of your positions on other boards, can you outline in general what type of organizations they are?\n\nMs. Stollenwerk: Absolutely. I reside in Baltimore, Maryland and I am on the board of the Maryland Association for Mental Health. I am also on the board of Free State Justice which is an organization that works on equal rights, an advocacy for the gay and lesbian, bisexual and transgender community.\n\nDr. Young: Talk a bit, if you would, about your professional background.\n\nMs. Stollenwerk: As I said, I run a small consulting firm. And when I started that firm back in 2013, I was not only continuing to work with my former employer but I also used the opportunity to start a non-profit called the Patients’ View Institute. And the idea of the Patients’ View Institute was really to build on the availability of information that comes from patients, whether it is the CAP surveys that are done through hospitals and clinician groups or the other work that has been done in healthcare, frankly, within healthcare from a marketing standpoint in terms of understanding patients’ perspectives. But we started the Patients’ View Institute to pull together stories from individuals, whether they consider themselves patients or consumers of healthcare, because we understood that the true patient perspective is much richer than is typically captured in surveys. So myself and a partner, Sheena (?), started this non-profit, so I was the founding director, the executive director for a while and then chaired the board of directors for several years. So the Patients’ View is gathering stories from patients and consumers and then doing both a qualitative and a quantitative analysis of the content of the stories, everything from topics to the scale of positive to negative to the intensity of experience that is expressed by the consumer or the patient in the story. And then turning that into data, data to be used to inform organizations that are thinking about how to be more patient-centered, how to engage consumers, how to really, truly understand the perspectives of individual patients as they experience the healthcare system, not as healthcare insiders want to ask about or know about. So the Patients’ View Institute really was built on work that I had been doing prior to starting my own consulting firm. And that was when I was a vice president of Stakeholder Engagement for the National Quality Forum based in D.C. And NQS is the organization that reviews and endorses metrics measures to assess the quality and effectiveness of healthcare and as NQS began to get more involved in trying to understand what is patient-centered care, what does that really mean? Who defines it? How do you engage patients? How do you measure the effectiveness of that engagement? So my work as the head of Stakeholder Engagement for NQS not only got deep into the area of really helping NQS understand the patient’s perspective but also working on how do we take those soft experiences and turn them into data in a way that the science-minded leaders within healthcare would frankly give credibility to it? Too often, not only at NQS but also prior to being at NQS … I was the director of the Washington Health Alliance out in Seattle, a multi- stakeholder group brought together to improve quality and outcomes, the effectiveness of healthcare. I was responsible for patient engagement, patient experience. I was working with the employer community and working with the provider community. And in doing that work found that patients’ perspectives were often dismissed as being anecdotal or dismissed as being not as important to quality and outcomes as, let’s say, information that one could get in a clinical chart or in an electronic medical record, administrative or billing data, about whether an A1C test isn’t  administered to somebody who is diagnosed with diabetes – and that was seen as quality. And the patient’s perspective often was dismissed. So the work I was doing there in the Washington Health Alliance got me more interested in how do you engage organizations that say they care about being patient-centered to really think about and apply what does that mean. And then bring patients into the discussion and then use the information they learn from patients in order to improve the quality and outcomes. Because we know so much of healthcare really depends on decisions that are made by the patients. If I’ve been diagnosed with diabetes and you send me home and say you need to work on improving your exercise, reducing your weight, improving your diet, staying on insulin, whatever it might be, there’s a lot of that, the influence into outcome of care, that is absolutely in the control of the patient. So how do you engage patients to be partners to get those good outcomes? \n\nSo start with my work with the Health Alliance. I was recruited to Washington, D.C. then to take this perspective not only from Seattle, but I start working with other communities across the country who wanted to replicate what we were doing in the Pacific Northwest. So NQS recruited me to help them understand the different perspectives not only as stakeholders in the consumer arena, but we had worked very closely with employers in addition to hospitals and specialty providers and ancillary or non-semantic care providers, so on and so forth. So I went to NQS, then eventually broke off and started doing my own consulting work with NQS as a client but also working with others, including the American Institutes for Research, PCORI, ARC, in some of their work around reporting of quality information and how to engage consumers. And foundations also engaged with us, particularly with the Patients’ View Institute, to really understand the insights that we were learning from the analytic data we were pulling from patients’ experiences. \n\nDr. Young: When you say that you’re pulling from patient experiences, what form does that take?\n\nMs. Stollenwerk: The raw data, if you will, comes from the patients or the family members themselves. In fact, we were very deliberate about saying you tell us your story, we’re just going to shut up and listen. And that’s what we often told people, you tell us what you want to describe about your experience with healthcare and we’ll learn from that. Some people called and talked to us over the phone and we recorded their stories. Others wrote brief stories, some wrote pages and pages. Some people submitted artwork to us. Some people shared it in photographs. Sometimes people did cartoons. For several years we’ve done a National Patient Perspective Award in collaboration with --, which is primarily funded through the employer community, to really highlight the experiences that patients have with healthcare. So that was the raw data, if you will, just the stories that people were willing to share. But then what we do, we would go through those stories and tag the stories to start turning the soft qualitative data into quantitative data. And with a few thousand stories collected, we were able to start showing that there were really important themes coming out of those stories. For example, patient’s respect really matters. And respect can be evidenced by moments when physicians or others ask the patient or the family member their opinions and then clearly do something with that information. So, as one example of an insight that could be applied in the healthcare world – about how to behave in a way that improves the experience of the patient in a very tangible way, that engages the patient to be more actively involved in their own healthcare and actually results in better  health outcomes. The issue of cost came out many times in stories. That was another very strong theme with a story. The other one, I would say, is a distinct difference between what you see from surveys. So using the CAP survey, for example - where I might get a survey sent to me after going to get a mammogram or having an appointment with my primary care doctor and the survey is focused on what was my experience at that singular visit. What was my experience after a given hospitalization? And yet from the patient’s perspective, that is one point of one moment of time in a spectrum of interactions that really are what the patient is most focused on. In other words, the continuum of time is important for the patient. It’s my experience over time. So I could talk to you about that one visit but it might be the follow-up two months later that really has an impact that changes my overall experience. So surveys really only capture a small piece of what is really a larger experience from the patient’s perspective. Continuum of care, care coordination, these are the kinds of things that don’t get captured in the survey data.\n\nDr. Young: So it sounds like medicine, healthcare, had moved at least parts of the overall healthcare system to seek information from patients, although it’s usually very structured and very focused on singular events or time periods. And you had a very open question very much ending up with narratives that you then examined systematically to see what are patients as a whole talking about. And it sounds like you’ve identified it’s not just a single instance of care, they want to talk about their overall care and the value of being asked questions and being involved in decision making about their care. Am I getting that right?\n\nMs. Stollenwerk: You are. And it’s not just asking the questions, but actually seeing the information that the patient shared being applied in the decision making process. And another interesting observation that came out of a number of stories that I think often gets missed when you talk about what patients’ experiences are with healthcare, their respect – a true respect is not only about the interaction between the provider and the patient but it’s the patient observing the interactions between the provider staff. So this could be how a physician is interacting with a nurse or how the nurse may be talking with the person at the billing counter, this kind of thing. Patients are very intuned to the quality of life, if you will, of the entire provider team and how that has an impact on the quality of care and the experience that the patient experiences as well. Which I think is really good news for those who are looking at … You know, people will talk about the Triple Aim and will talk about the Quadruple Aim, about the quality of life on the provider’s side. Well, that kind of information doesn’t typically get captured in patient surveys. But when you listen to patients talking about what matters to them, the moment when they observe disrespect or a working environment that their physician or physician assistance, nurse practitioner, or whatever, a working environment that is not positive or that is negative or that seems stressed out, that also affects the patient’s experience with the care. And there are many other observations. But that work at the Patients’ View Institute is doing, we’ve taken that information and it has been shared with the Agency for Healthcare Research and Quality and others who are looking at how to improve patient engagement, how to measure patient engagement. And I know that CMS and ARC is working on a future generation of the CAP survey to actually start selecting free form comments as a way to start capturing the qualitative information that, again, a highly structured survey completely misses. And it misses, I think, important insight that patients can bring to the table. \n\nOne other thing I would mention that I do think directly ties to the work that FMA Health is doing, and that is the other piece of the Patients’ View Institute has been to encourage active engagement of patients, individual families, consumers, whatever word you want to use, in the decision making process at all levels in healthcare. Not only at the individual interaction about their clinical care but also are organizations, and I use that very broadly, whether it’s hospitals, nursing homes, health plans, physician clinics, multi specialty groups, policy making bodies that influence healthcare – are those organizations involving patients in the shaping particularly      \n\nof those aspects of their work that the patient has contact with? So, for example, does the hospital include or involve patients in the process when the hospital is developing materials that are supposed to be helpful for patients? Like the discharge materials, have those been reviewed by a team of patients to give their feedback? Taking it up one level from the operations, at the policy making level, how many health organizations actually do have members of the public, non-healthcare insiders, patients themselves, at the table in the -- boards or other policy making bodies that are shaping the direction of the healthcare organizations? So the Patients’ View Institute also is focused on that and the unique needs and, I guess, the perceived barriers to really engaging patients at all levels in healthcare. If we want consumer or patient-centric healthcare, if we want patient-centered healthcare, you need to get patients involved. What is that. “There’s nothing to me without me?” So that was also a very important part of the Patients’ View Institute. \n\nDr. Young: This sounds sort of like the work that Milt Seifert (?) did in Minnesota back in the 1970’s with patient advisory boards. And my knowledge of that is from the Department of Family Medicine and Practice in Madison, Wisconsin where I sat as a staffer when I worked for the department, not as a physician, in the Patient Advisory Committee. And I remember our youngest member of the committee as an adolescent. And then there was, at the other extreme, an elderly. And there were residents and nurses and office staff who also participated in the meetings. And they tackled issues that I don’t think had been thought of by any of the staff or residents. And one of them had to do with how do I find my way back to the exam room from the laboratory. And in this particular case, this was an old nursing dormitory, so it wasn’t designed for patient flow. \n\nMs. Stollenwerk: I think that’s a fantastic example and you’re spot on right. So there’s the advisory group, that’s one way to start bringing patients more into the decision making process. One of the issues, and your example highlights this beautifully, when organizations are faced with this question of do you have patients on your board, do you have patients advising on the development of materials or the signage or whatever it might be in terms of how an organization might offer it, one of the very common reactions for those who are skeptical is to say, well, we’re all patients. I mean I go to the doctor. And even though I might be a physician leader, a hospital CEO who also happens to be a physician, or whatnot, the reaction is often, well, we’re all patients, so why do we need to have somebody involved who doesn’t really understand how we operate - because I can just talk about what it’s like to be a patient. But the issue is, back to your example … There’s a difference, (what is that called?), “The tyranny of knowledge.” Once you really know something, it’s impossible to understand what it’s like to not know it. So the people who work at that facility who know how to get from the lab back to the waiting room, or whatever – they know how to navigate the physical, navigate their way through the building, wouldn’t have thought that the signage isn’t clear, right? - because they know it so well. And to bring in folks who are not, and I’ve come to call it not healthcare insiders … To bring in folks who are truly representing the perspectives of the patients, they don’t have the benefit of that inside knowledge. They can highlight and bring perspectives to the table that even the most compassionate, fully engaged, caring physicians might just not see anymore because they --, they know what they know. So a great example.\n\n\nDr. Young: Why has it taken so long for medicine or healthcare in general to recognize this and implement it into care and if you could speak to what extent family medicine especially seems to have been attuned to it even though … As I say, the 1970’s is when I experienced this in a very innovative program, but it didn’t generalize. I don’t know how many of the residents in training carried forth that into their practice. \n\nMs. Stollenwerk: It still has not been generalized. I mean you’re right, you were involved in quite a forward thinking movement. There are some pockets of healthcare where it is standardized. For example, the Federally Qualified Health Centers to have a certain percentage of board members who are actual patients of the clinic. So they have been structured, I think it was through HRSA, to actually have consumers on their board. The Health Resources \u0026 Services Administration. Yes, thank you for the clarification there. So the Federally Qualified Health Centers, that’s the place where it becomes the norm. Frankly, it’s required, so every FQHC has patients or consumers on their boards. I would say the vast majority of organizations still do not – and there are several reasons for that. One of the most impactful courses that I took in graduate school at Harvard was on industry analysis. I was at the Kennedy School of Government and the Harvard Business School. And this class on industry analysis really led me to a guiding principle in my own career. And it’s not that earth shattering, it’s follow the money - and, really, looking at where are the financial incentives. And this holds true whether you’re talking about healthcare or any industry, you name it. But even if philosophically or conceptually folks agree about what the right thing to do is, if the financial incentives don’t support that, the vast majority of decisions are going to be in a way that aligns with the financial incentive, not with anything else. And the healthcare system is set up so that as much as we talk about patient-centered care, until the financial incentives really are clear that there is money lost when the care that’s provided is not patient-centered, that there’s a lot of inertia around change. And, as you know, I did not say that my name is Dr. Stollenwerk. I am not a physician. My focus has always been on health policy and stakeholder engagement and working to improve the healthcare system. But again, I am not a clinician, so I will couch my opinion in that perspective. I think that the way healthcare reimbursement happens really undermines the priorities on insuring that the healthcare system is seamless and equitable and results in the best possible health outcomes. There are too many structural and financial incentives that don’t support that, so I think that’s why there really hasn’t been the uptake in patient-centered care – that’s one. The other piece is the lack of transparency. It’s still unconscionably different for a patient to get their own medical records, correct information in their medical records, be able to see information about health outcomes at a level that is actually useful for patients in consumer decision making, even for employers’ decision making, to the degree that transparency improves and payment incentives really support patient-centered care. Which I believe primary care, family medicine stands to absolutely benefit from patient-centered care because it leads people to their relationship with their family doctor. But right now the same barriers that prevent true patient engagement, frankly, I think, are the same barriers that result in family medicine being underfunded and under-valued in terms of the real impact that family medicine does and potentially could have on improving health outcomes.\n\nDr. Young: Is that changing as healthcare evolves, the look at disparities in communities, the ability to have access to care more directly? I’m probably not expressing that very well. There is a type of primary care now where patients sign up with a doctor. The doctor gives them their phone number, they’re paying on a … It’s direct primary care, I believe is the terminology. Right. But that still doesn’t help you if you have to go to the hospital or see a subspecialist. That’s not part of direct primary care.  \n\nMs. Stollenwerk: Right. And some people refer to it as concierge care or that kind of thing, yes. \n\nI shutter hearing concierge because that seems to imply a level of income and how you want to be treated. But often that’s the way it is though. I’m sure you are correct. It’s a bit harsh to put that way, but I think it calls out one of the issues – and that is how do you insure a healthcare system that is designed in a way that benefits all patients, that works for everybody, regardless of income, regardless of … I mean I’ve always been aware of the fact that when I’ve had struggles with the healthcare system, which everybody has one way or another, whether it’s from billing or access for getting an appointment on time or finding the right kind of physician or specialist when there’s a particular need. I have contacts. I know people in healthcare. I know how the healthcare system works. I know what questions to ask. I know what to document. And I, like I’m sure you are and just about everybody who works in healthcare, become the go to person in their family whenever there’s something that someone is struggling with. It’s like, oh, call Diane, she can help with this, she’ll help figure this out. We all deserve a healthcare system where you shouldn’t have to have that insider to help you get through it. And whether it is that special primary care where I pay a certain monthly amount so that I can text my doctor and do weekend calls and that kind of thing, shouldn’t have to pay extra to have somebody navigate a really confusing system. \n\nDr. Young: Of course, what we’re evolving with so many different experiments in healthcare is immediate access through available urgent care clinics and so forth that aren’t connected to your usual source of care. Right. Except for some larger systems where at least the electronic medical record is available at the urgent care center throughout the system. \n\nMs. Stollenwerk: This gets to the idea, the issues that arise around transparency, data sharing, the things I think of as disruptive technology. Whether it is the development of apps where I can rate providers or I can look to see what do other patients think about the doctors in my area. The changes in payments. We haven’t really talked specifically about FMA Health yet, but I think one of the very exciting streams of work being done by FMA Health has to do with this tool to estimate payment because employers and payers really are aligned with consumers to right size the focus on health and continuity of care through primary care. Because the employers want better outcomes. The employers want earlier, effective intervention. They want to see the relationship happen with patients, to motivate the patient to be more involved in the decisions to maintain their own health. The consumer-driven healthcare is really something that employers are very supportive of. And that disruptive technology, whether it is, again, the shifting and the payment incentives … I also think about, for example, years ago when I was with the Washington Health Alliance in the Pacific Northwest and Walmart announced that they were putting in clinics in their super stores. Because we were gathering data from all of the health plans and the health plans were providing their data to us and self-insured employers were doing that as well in order to support what we were doing, we went to Walmart because their data, like the urgent care clinics that you’re talking about, weren’t connected anywhere. They weren’t part of any information or data exchange. So in talking with the policy person, the national policy for Walmart at the time, they basically said they had no interest in sharing their data because they saw that the data they were collecting was giving them a competitive advantage over other freestanding clinics, ambulatory clinics, walk-in clinics, whatever it might be. And their sole motivation is success in the retail marketplace, it isn’t this sort of larger issue of how do we make sure that the healthcare system creates the best result. So all of that is to say I think disruptive technology actually holds incredible promise because I hope it will force folks who have done very well by working in the current healthcare system to recognize that change is needed. The other stream that I think is an interesting kind of trend to watch is what we see happening in this political environment as well. And I’m not talking so much about the divisiveness. I’m talking about the democratization. In other words, individuals on both ends of the political spectrum, both very liberal, very conservative and all points in between. There is an increasing number of people who want to see more power in the hands of individuals as opposed to trusting institutions to make those decisions. And I think that when you combine that with hopefully increased transparency, there’s starting to be more reporting on healthcare costs, for example. Those efforts, those streams give me hope that there will be change in healthcare that opens up what largely has been pretty intractable in terms of the complexity, again, of the contractual relationship, the inequities in payment when you look at the specialty payment rates versus primary care. The lack of information about the quality of various healthcare options for consumers. I think there will be a growing push from the public side to continue to insure that the limited dollars going into healthcare get the results that individuals need. And how will the individuals express that? To whom? Are we talking about to employers, saying I want a better plan, or to the government? I think it’s the private sector continues to be a really strong force in that regard, one of the reasons I find the work on the payment tool very exciting, coming out of FMA Health. Particularly as that payment tool gets in the hands of healthcare benefits consultants, employers, those who are engaged in purchasing healthcare, to be able to say how do we right size the financing to really emphasis what we know will get us the outcomes, will be more likely to get us the outcomes that we need. And that is to really appropriately fund family medicine and primary care in order to improve outcomes. And the employer community of payers having a tool in hand to help them get what they’re looking for, the value that they’re looking for in the money that they’re spending in healthcare really aligns quite well with what consumers are looking for. I think a lot of employers going to narrow networks, for example, in their contracting, sometimes that just comes from the fact that the employers also are dealing with little or no information and are trying to figure out how to do something in the dark, if you will. So this has increased availability of data to be able to really align the payment in a way that emphasizes and rewards a strong relationship between individuals and family doctors. And I think doctors. But it doesn’t always have to be a physician and it doesn’t always have to be a person. I mean the use of telemedicine is really important, particularly given shortage of doctors in rural areas who don’t necessarily have the time or the ability to get to the places where the physicians are available. So again, it goes back to that disruptive technology. So the combination of people generally, the public generally being more outspoken about what’s acceptable and what’s not acceptable, the increase in transparency around more information, particularly around costs and outcomes. The ability for employers to use this information and to restructure their payments. It’s all of this that gives me hope except for the stronghold that the traditional medical community has in the political environment. I think that’s where primary care, FMA Health, family medicine will have a choice, will increasingly have to make a choice between really pushing for and siding with family medicine’s prevention, a proactive engagement with consumers or the traditional stand, for example, that the American Medical Association and many of the specialty associations have done to really protect their own at the cost of the healthcare system overall. The first board meeting of FMA Health that I went to, they asked at the end for me to share some observations. And I got choked up, tears came to my eyes. And I said, after spending two days in discussions with representatives from all of the FMA Health members, I felt like there was hope. Because I’m fifty –six and I’ve worked in health policy my entire career and this was the first time that I have engaged … And health policy specifically is working with different types of stakeholders, including physicians. This is the first time I’ve ever been involved with a group, primarily a group of physicians where they seem to truly value a healthcare system that works for patients, that works for consumers, that really would be positioned to treat the whole person, to really provide the patient-centered care that is not just when somebody is sick, not just when somebody needs to be hospitalized or, it’s kind of harsh to say it this way, when there’s money to be made because somebody needs very expensive specialty care. But it’s the upstream work as well. How do we work with people to encourage and promote their health and do the things that patients and families really want in that relationship with their doctor over time. Keeping them healthy but also walking with them through that relationship when they become ill. And the people involved with FMA Health get it. They get it. And at some point we’re going to have to make a decision about if this really does come to a fore and there are choices to be made about what kind of healthcare system we want, I think there’s a whole lot of the medical community, unfortunately, who will opt to fight for keeping things the way they are because they make money off of the complex system that we currently have. \n\nDr. Young: Have you had experience in those years with family medicine in terms of its philosophy, its modes of training, et cetera?\n\nMs. Stollenwerk: Yes, and as a smaller percentage of a larger multi-stakeholder group. So sitting at the table where they may be employers and insurers and consumer advocacy groups, there may be the local or state or national medical association, specialty societies sitting there with all of the others, might be somebody who is representing family medicine. And perhaps it’s just the factor of the drum beat isn’t as loud when you just have one or two people representing family medicine in a larger group. Family medicine coming together under the banner of FMA Health has a level of impact because the organizations can do together what no single organization can do by themselves. And so perhaps that’s why it was just washed over me in such a powerful way to hear all of these different organizations sitting at the table with FMA Health talking about how they could collaborate in a way that really brings the healthcare system to a place where it should be from the consumer’s perspective. \n\nDr. Young: Did you hear anything about the prior attempts of the various family medicine organizations to work together? And Future of Family Medicine was the version that preceded this one. And I’m curious whether in the discussions of FMA Health board there was sort of a recognition of this is the moment and we have a different way of doing it, that’s what FMAH did, such as the creation of some of these tools and so forth.                        \n\nMs. Stollenwerk: So, yes. To answer your question, yes. I come at this work, and I have for a long time now in various stages of my career, recognizing that everybody, there isn’t any type of individual organization out there that isn’t affected by the healthcare system in some way, whether it is as a employer or right smack in the middle of it as a type of clinician or a healthcare facility or whatnot. But everybody, every individual, every organization in our country. I mean good Lord, just looking at the percentage of CDP (?) that goes to healthcare. I mean everybody’s affected. So I believe in multi-stakeholder efforts, multi-stakeholder solutions. At the same time, I also have learned that there is more power when organizations come together and they identify where they are aligned and they coordinate what they’re doing in order to achieve shared goals. Some kind of structure around insuring that the right people are at the table, that you keep the momentum going, that you engage folks in a planning cycle. It’s a plan –  do, study, act where there’s a very deliberate process. There’s structure, there’s follow-up that doesn’t happen organically. And I understand and I have been part and I have heard discussions within FMA Health about the way things were in the past and the recognition of the value of collaborating. The decision to say we’re going to collaborate. And not only are we going to collaborate but we’re going to put a very clear structure. We’re going to support that structure with funding for people to insure that whether it’s scheduling meetings and having materials and insuring that the work gets done and doing this strategic planning. Especially when you’re talking about organizations and individuals that already are full time busy with other activities, as nice as it may sound for people to say we’re going to meet quarterly and we’re going to work on this together and we’re going to agree what we all agree to, then when everybody goes back into their own organizations and their own priorities and their own worlds, without some kind of deliberate structure to insure that progress is being made to hold organizations or individuals accountable for commitments that they’ve made, to say, you know, we really need to rethink our strategy here because of new influences in the environment. Without that structure it becomes more of a nice discussion as opposed to a very strategic effort to have a collective impact.\n\nDr. Young: Is that structure there for the continuation? Because obviously the core teams are either already done or are finishing up their work. And, frankly, I don’t know – when is FMA Health ending?\n\nMs. Stollenwerk: The slate is to wrap up later this year in 2019. And my understanding is that with the working groups, which these organizations come together on a regular basis (it might be every six months or quarterly), it is more of a loose confederation of folks coming together and saying, so, tell me what you’re working on and I’ll tell you what I’m working on. And we can say we should check in on this and we should coordinate on this. But then they go back into their own corners to continue their own work. And it’s very different from a deliberately structured effort like FMA Health has been with the dedicated core teams that are focused on particular issues where there are expected outcomes and there are process steps in the interim. There’s accountable, there’s products that they want to produce. So to answer your question, I do not think that the loose confederation could possibly have the same level of positive impact that FMA Health has had and could potentially have if the organizations agreed to fund a more deliberate structure to work together to have an impact. It’s back to that multi- stakeholder group and you’ve got one individual or one organization at the table that represents family health. And they get drowned out because they’re sitting there among so many other voices. The power of so many family medicine organizations coming together and collectively having a louder voice, there’s no replacement for that if you take away the infrastructure that insures that voice happens and is effective. \n\nDr. Young: As I understand, the core teams, in developing their activities and then handing it off, in some cases the handoffs appear to be joint, not just one organization. And in other cases certain well-defined projects are being finished by different organizations represented in the core teams. But those are focused not on the big picture but on more specific things. I think the payment tool, for example, has great potential but it’s focused on the payment aspect within the broader context of good outcomes. At the board level I haven’t heard yet a process that is as firm as I think what you’re saying is needed to continue the broader discussions and the coordination of messaging, of outreach and so forth. When we do follow-up recordings in five years, any predictions? Or what would assure us of the best outcomes that might need to be addressed structurally, organizationally in the next year or two?\n\nMs. Stollenwerk: I would hope that there are individuals who are involved in the leadership of FMA Health now who are also involved in the leadership of their respective professional organizations who can keep the torch alive in terms of the questions around the larger strategies. So as you, yourself, point out: For example, the payment tool. A really valuable tool in this environment and will continue to be a valuable tool five years from now or even longer. But as the environment changes, where is this group that’s thinking about shifts in strategies or new applications of that tool or ways to couple that tool with other efforts to have a greater impact? So it’s the larger body that’s thinking strategically not around sort of the individual tactical pieces but that keeps those tactical pieces in a larger, more deliberately structured and thought out strategy. So my hope is that from now through the next five years that perhaps there will be a recognition of what is lost when you don’t have a deliberate group who are thinking through what the larger strategic issues are and how the environment might be changing and what’s needed. I mean it would be wonderful to see something like FMA Health be pulled back together with a more permanent infrastructure. Even thinking about ways to sustain the infrastructure so that it’s not solely based on contributions by the member organizations but even productizing certain efforts. I mean something that brings in income streams or pulling in grants. Some kind of funding so that it really is recognized as an ongoing infrastructure that is needed and not a sort of time limited, wasn’t that an interesting effort that we did. If this works … It’s certainly not done and therefore it shouldn’t be time limited. I mean until we get it right in terms of the healthcare system changes, my fear is that five years from now we’ll talk and there won’t be a whole lot different from what we’re dealing with. \n\n\nDr. Young: So a real challenge to the organizations that have made up Family Medicine for America’s Health as they come to grips with the fact that there isn’t a board as currently planned, at least, coming together on a regular basis addressing the issues as they are today but also as they’re going to change over time. One other thing (and we’re going to need to flip the tape here in just a moment) … As you look to making change in the system, influencing change, this has been a group of family medicine organizations that have come together. But for change, especially the way you outlined it in terms of what percentage of the current healthcare provider groups are in one corner and family medicine in another, how about the other specialties that represent in medicine primary care, at least to some extent, and also the other providers of healthcare who are also often divided into the subspecialty end and the primary care end?\n\nLet me turn the tape over at this moment and then we’ll start again.\n\nTape 1, side 2\n\nDr. Young: This is side 2 of tape 1 of the January 7, 2019 interview with Diane Stollenwerk, a member of the Board of Directors of Family Medicine for America’s Health. \n\nBefore I turned the tape I raised the question of can the changes that need to be made be just from family medicine or is outreach to the other primary care medical specialties and other clinicians in primary care something that needs to be done. \n\n(Tape malfunction, repeating question.)             \n\nMs. Stollenwerk: I appreciate the question. And I will start with the context of I come at this work from the perspective of the question who is the healthcare system here for. And the whole point and purpose of having a healthcare system is to keep people as healthy and functioning as possible and to help them as they become ill. So the full life, right, from birth to death. But it’s about the patient. It’s about the individual and families. So the reason why I start with that context is because the coalition building I think is imperative for family medicine’s position. And I suggest thinking about it as a concentric circle. So you might have the family medicine physician starting with that core. If you have strong coalition there. Then you extend it to a broader circle and that broader coalition not only is others slightly involved in primary care who see themselves as being an important part of family medicine. I was talking with a friend of mine who is in leadership at the American Academy of Pediatrics and I happened to mention Family Medicine for America’s Health and the difference between family medicine and primary care. And she just shook her head and said, I don’t know why there is that division that’s made. So the coalition building not only with other physicians who are involved with primary care but then, again, back to the consumer, the patient perspective. Think about nurses involved in primary care, the physician assistant, others who are part of the family medicine team who from the patient’s perspective are all part of the team and could be incredibly powerful allies in the effort to really put family medicine and the relationship with patients front and center. And some people say it’s physician extenders which to me is interesting because it’s still very physician-centric. But that’s okay if that’s the way people need to talk about it. The point is, I would suggest that that coalition or that broadening go beyond the physician and really involve a broader spectrum of those who provide clinical care and also the related services and support that really result an effective family medicine care team, whether it’s behavioral health, dental, social services. I don’t want to go too wild here, but the point is that coalition shouldn’t just be limited to physicians. I think you start with that. But, yes, it should be bigger, but it should also go beyond folks with an MD. I’ll go back to I think that’s the way you create the greater potential for impact. Because it’s a tough thing. When you start going up against, for example, the RBRVS, the committee that updates the payment levels that drive Medicare and therefore Medicaid, which are huge payers. And again, I go back to following the money. As long as you’ve got the RUC, which is the RBRVS update committee, primarily a body of specialists that are not family medicine, it’s hard to counter that kind of structural control that non-primary care, non-family medicine specialists have on how the money flows in healthcare. And as long as the majority of dollars are going towards that end of healthcare, it’s an uphill battle without creating a very large coalition of folks that resonates with patients and consumers, that resonates with employers, to say we need to restructure our priorities and place a far greater percentage of healthcare funding where it has the greatest impact, which is in family medicine and primary care.      \n\nDr. Young: And how has that changed? I’m not sure I understand your question. What is the process that would either change who’s on the RUC or say, no, we’re going to try a different way to do what the RUC has as an assigned process?\n\nMs. Stollenwerk: I think you have to do the “both” “and.” I think the work that FMA Health has been doing that builds out the public awareness. And when I say public awareness, it’s mostly awareness which is D.C., among members of Congress and staff and administrative staff, agency staff around Health Is Primary. To have the policy discussions around the priority and the impact that primary care, that family medicine has on improving health outcomes. The value proposition that one can argue effectively regarding the value of medicine and primary care, those efforts which you could see as PR effort, you could see it as public policy. It’s an information strategy that needs to happen at the same time really identifying where are those decision points that drive funding decisions. I say a political advocacy agenda to get more primary care, family medicine voices on the RUC as one very deliberate strategy. Another strategy is, again, the payment tool. Getting that payment tool into the hands of the National Business Coalition on Health which is where multi-national employers come together who are self-insured employers who are making decisions. I mean Boeing, it was ten years ago when I was doing most of the work I did with Boeing. At that point, ten years ago, they were spending $2 billion, with a “b,” a year on their employees’ healthcare. That’s not small change. So who is working with Boeing to insure that they have access to the payment calculator? And it’s not just Boeing. That’s one example of a large ... That’s a great example of the kind of broad strategic thinking that a structure like the FMA Health board or some future structure of organizations come together to say where are the points that really drive the financing decisions and what are the tactics that we are going to employ to bring family medicine front and center in those arenas that are driving financing decisions in addition to the broad based communication strategy that FMA Health is engaged in. And, frankly, I think it’s a shame that that investment in the goodwill and the understanding and the information around the Health Is Primary campaign … Their startup cost, if you let that go fallow and then you have to later say let’s try to pick that up again rather than just continuing to build on that momentum. So I see it as a “both” “and” strategy. But I go back to one of my first points, and that is follow the money. Where are the financing decisions being made – and get into those discussions.\n\nDr. Young: Are there any last thoughts that you would like to share before we end the interview?\n\nMs. Stollenwerk: A couple of quick things. When I was a grad student, my thesis I did on the pharmaceutical industry and specifically did a comparative analysis of different organizations, different pharmaceutical companies. This was an external and internal organizational development. But an analysis of various pharmaceutical companies to get a sense of what were the factors that really influenced their effectiveness in shaping public policy. Whether it was how they were structured internally, how they approached working with elected officials, particularly members of Congress and working on the Hill. Working with agencies, so on and so forth. I did a lot of work with the pharmaceutical manufacturers and associations in the process of doing this analysis. And there was one company at the time who stood out head and shoulders in terms of an organization that was trusted, was influential. And the key factor was really about being willing to be visionary, being willing to recognize where they stand today in the current market. But really being forward thinking to say how do we reshape healthcare into what we think it ought to be. And at the time the pharmaceutical companies were dealing with the federal agencies as a regulator. So it was a very adversarial position except for this one company who was saying, yeah, they regulate us but they also buy a heck of a lot of healthcare. And they started to work with federal agencies as a customer, as an ally, as a partner to say how do we bring to you what it is you need and how do we make sure that we’re doing what we can to meet your needs. It’s, you know, their sales and marketing mindset. And I learned a lot from that experience, one of which is the importance of strategic thinking, the importance of longer term strategic thinking and working to connect the dots to say if we know we want the future to look like X or we recognize that the future is heading in a way. Whether or not that’s what we want, that’s where it’s going. How do we position ourselves to win, to benefit from where the environment is headed? And I think that ability to do that kind of strategic vision and strategic thinking and planning and adjustment in terms of practical work, I really do hope that there is a revisiting of the question of whether there’s a future structure that holds these various family medicine organizations together and builds an even broader coalition. Because again, as I think about patient-centered care, this group gives me hope if they continue to be effective and have an even bigger impact. And without an infrastructure I have less hope that they can do that. But with an infrastructure, I think that the possibilities are tremendous. I’ve just been impressed with the time commitment that everybody on FMA Health board makes to this work. They’re all kind, thoughtful, incredible people who really are trying to do the right thing. And not everybody I’ve worked with in the healthcare industry does that. Many are just almost like they’re driving the car forward by looking in the rearview mirror. And that would not describe FMA Health board. It is just an exceptional group of visionary people who I really hope there’s a way that this kind of impact can not only continue but expand in the future.\n\nDr. Young: Diane Stollenwerk, thank you so much for making yourself available for this Oral History for the Center for the History of Family Medicine.\n\nMs. Stollenwerk: Thank you. I appreciate the opportunity to share my views. And it’s been an incredible experience to be a public member on the FMA Health board.\n\nDr. Young: Thank you.","format":"text/plain"},"target":"https://centerforthehistoryoffamilymedicine.aviaryplatform.com/collections/3491/collection_resources/162278/file/295068#t=0.0,3600.7299"}]}]},{"id":"https://centerforthehistoryoffamilymedicine.aviaryplatform.com/collections/3491/collection_resources/162278/file/295067","type":"Canvas","label":{"en":["Media File 2 of 2 - StollenwerkDiane_02_Access.mp3"]},"duration":984.1527,"width":640,"height":360,"thumbnail":[{"id":"https://d9jk7wjtjpu5g.cloudfront.net/public/images/audio-default.png","type":"Image","format":"image/png"}],"items":[{"id":"https://centerforthehistoryoffamilymedicine.aviaryplatform.com/collections/3491/collection_resources/162278/file/295067/content/1","type":"AnnotationPage","items":[{"id":"https://centerforthehistoryoffamilymedicine.aviaryplatform.com/collections/3491/collection_resources/162278/file/295067/content/2/annotation/1","type":"Annotation","motivation":"painting","body":{"id":"https://aviary-p-centerforthehistoryoffamilymedicine.s3.wasabisys.com/collection_resource_files/resource_files/000/295/067/original/StollenwerkDiane_02_Access.mp3?1760560115","type":"Audio","format":"audio/mpeg","duration":984.1527,"width":640,"height":360},"target":"https://centerforthehistoryoffamilymedicine.aviaryplatform.com/collections/3491/collection_resources/162278/file/295067","metadata":[]}]}],"annotations":[]}]}