Transforming Patient Participation: Dr. Susan Woods

Today it's my pleasure to have with me in the studio here on Little John Island, Dr. Susan Woods, who really shares quite a few commonalities. The more that we talked before we came on air, the more that I understood there's some connections going on. So thanks for coming in, It's my pleasure. It's wonderful. I think what you're most recently doing is being an ambassador for Food for Health, but there's so many different pieces to your exciting life and as a physician who loves to have different things going on, I can really relate to that. So what do you want to talk about first? I have had a very wonderful journey. I've pivoted a few times, which has been sort of a combination of luck and persistence and tenacity, just doing things that I find to be important and relevant. So I've really, my husband calls me a little bit of a change junkie, but honestly, I don't do a lot of things at once. I really sort of dig in. I started with primary care and research and public health, health services research, but quickly sort of pivoted into A variety of areas. You were one of the founders or maybe the founder for the Center for Tobacco Independence and the Maine Tobacco Helpline, which is very well known. It's become basically an institution in Maine. But the fact that you kind of knew back in the day that this would be really important and a really great resource, I think is intriguing to me. The fact that you probably had to convince some people before this happened. Well, again, it was sort of a little bit of luck and interest, and my interest in tobacco actually starts with design and art because after college I moved to the other Portland - Portland, Oregon, where I spent over a couple of decades. But I loved going into antique stores and I fell in love with old cigarette ads from the thirties and forties where people have probably all seen them, but the ones that said, the doctor tells you to smoke Winston's or whatever. I just found those fascinating, mostly because clearly these companies knew how to sell, but they used clinicians, they used reputable people and they used messaging that really resonated with people and really undermined what was actually happening. And I actually became very interested in health communication and said, why can't healthcare do this? Why can't we, instead of lecturing people and say, quit smoking or whatever, why can't we be a little more creative? Use our right brain a little bit more? So I became very interested and all through medical school and residency started meeting people, behavioral scientists. Some of my longest, most amazing mentors on both sides of the continent were behavioral scientists that did counseling for addiction and tobacco. And I just became very fascinated with that. So we came to Maine in 97 and I started at Maine Medical Center and the residency program and then an organization that doesn't exist anymore, Maine Medical Assessment Foundation. And then in 1999 was the tobacco settlement. So it was, again, I was sort of in the right place at the right time and with the people at the state, including people like Dora Anne Mills, I mean, it was just an opportunity that needed to be seized. You also overlapped with someone that I got to know well, and that's Dr. Richard Rockefeller. And I know that you also, and I shared Deb Dietrich as a common soul to ourselves and Richard, who is no longer with us. He's another example of a forward-thinking physician, a family physician who decided to do something somewhat different and really kind of was an early innovator in the digital health space. Absolutely. He was way ahead of his time. And it's interesting that you bring him up because I believe Richard is the reason I went into informatics partly. The other reason was the tobacco helpline, which was telephonic coaching, and we connected to every pharmacy in the state because the goal was to make it easy for people to get the best treatments. We learned that we had tremendous impact. We had reach across the state, we had effectiveness, long-term quit rates, and I was just amazed with how much you could do outside the exam room. So telehealth, that was the original telehealth back in the S. And so I started, and of course I knew Deb and she with Richard, had developed a nonprofit called, I think it was called the Health Commons Institute, with a philosophy that I was also becoming very aware of, which was the combination of people and the internet and their clinicians. This sort of triangle of just amazing powerful forces where people could really learn, get information on their own, become more empowered, become more in control of their health and their healthcare. Tom Ferguson, at the same time he was out family also of family medicine Doc way ahead of his time created the term E patients, and I became part of the Society for Participatory Medicine, which believes in that power of people and families getting information and using it to really help themselves. So yeah, Richard was way ahead of the time. And in fact, when I decided to go into technology, which was around 2007, and I went back to Oregon, the day I came back, I'll never forget this because it was June, 2014, I was driving, it was a Sunday morning, sun was shining, it was beautiful, was driving over the bridge coming into Maine. When you get that like, oh, I'm finally back home. And NPR had an article, had a story about Richard who unfortunately had an airplane fatality. I pulled over the side of the road and called Deb. So he was one of the first people that I wanted to come back and say, Hey, I did this technology stuff partly because you stimulated me to do that. So Richard also was in practice with my father who recently passed. And what I loved about Richard, and I always loved to think about the people that inspire us in our professions. And so that's one of the reasons that I bring him into this conversation because he can't be here himself, but he did generate so much interest in liveliness and passion around doing things differently in healthcare is that he died in a plane crash, but also he was engaging in experimental treatments for his cancer that actually had been successful. That's right. For lymphoma. He actually was one of the first users of what is now standard of care. Yes, For lymphoma. He was also at the time, I don't know, it's now it's front page news, but using halucinogens for mental health ...microdosing. I mean, that was again, way back people were thinking, not that he was over the edge, but it turns out he was just ahead of his time. And one of the things that I, because this connects back to digital health, which is my current area of interest and communications, he did this back in the day, this computer program where patients would in and they would enter their own symptoms and then this information would be funneled into information that was provided for a doctor. And he had this idea that you could have a kiosk and it was those very large computers with, they weren't small screens. You had to go in and you had to enter things in. It was a very painstaking process and it gave us this very long sort of readout. And then we would have to kind of sort through all the things, but that was like ai, that was like here he was, he's having patients interfacing with the electronic system to generate information that we could find useful. And that was what, 30 years before we actually started doing this stuff. It's amazing to think about when people are willing to have open minds and look at things in a different way, how much further we can get. It's interesting, he was one of the first people I had met when I first moved here and I was at Maine Medical Assessment Foundation. He actually helped fund me here for probably a year, but he partnered with Martin's Point around, I think it was around 2005. They were the first ones. David Howes was CEO at the time, to have a patient portal. Now that conjures a very different thing today compared to back then. But Richard said he came to me as a researcher and said, let's demonstrate that this helps the practice. And after I stopped laughing, I said, Richard, maybe 10% of people have a computer in their home. Why we, let's do this. Let's take a look. Let's get all the visit data, the claims data, the diagnoses and some of the demographics from the health provider and see who's using it. And that actually is what changed. That was my pivot. My expectation was the term sort of worried well is that people who had the computers and were logging in and going into the early personal health records were going to be higher socioeconomic status, et cetera. And it was actually the opposite. It was people who had more chronic conditions. And at that point it was sort of technology had me at Hello and I said, whoa, this is not what I expected. And we published that I think around 2005 or so. And then there wasn't a lot of technology going on at the time. Even Health Infonet hadn't been born yet, which is our health information exchange, one of the best in the country. So I went back to Oregon to really dive into technology and then spent 10 years at the va. And the va, interestingly enough, I mean in some ways it, it's such an interesting, I worked at the VA very briefly and there are some things about it that are incredibly inefficient and some things about it that were incredibly brilliant and forward thinking and virtual visits and technology interactions and actually wellness. They do a lot of work with Whole Person Care and chronic pain management. So that's why I'm always so interested because here we are. I mean, healthcare can simultaneously be the clunkiest oldest piece of furniture that you can never get to feel completely comfortable. And also it can be a beautifully designed space pod for the future. And you and I exist within this Try to figure out the best way to help patients access everything to perpetuate their own health. Well, individuals navigating healthcare is very difficult and it's only become more difficult today, more expensive, more awkward, harder to navigate. But as an organization, and a lot of people don't understand this, the VA is one of the most cost effective, the most direct of your dollar that goes to direct care, an incredible source of inventions research, it trains. I've heard 75% of clinicians get trained at a VA across the entire country. And I think it has a little bit of evolving around its own planet sometime. And so if you're not part of that system, you may not know about it. But it is my time at the va. I had a total of, because I did two fellowships at the va, one in health services research in Seattle and one in informatics in Portland, Oregon. And did primary care and teaching and research. And it was one of the most exciting times of my entire career, especially around technology, the first to have an integrative electronic health record, one of the first to really put out very robust patient portals. We had a human factors design office that we worked with. I mean it was, it's like unheard of in a healthcare organization to have a human design. What does that mean to make the software better so people can access it and use it better. And then now they're doing, we were the first to roll out open notes sharing of all the notes. I had the honor to lead that 11 years ago. And now it is a funny thing, the VA is probably the largest institution today right now that's using virtual reality for training, education and therapy probably anywhere in the world. So it is a remarkable Organization. It's so good to be reminded of that because I think often the focus is healthcare is incredibly complicated, incredibly difficult to navigate. And also, I mean the pockets of brilliance that exist within healthcare and exists within the va, to be able to recognize that and to recognize that there's sort of, I dunno, there's spring flowers popping up everywhere and you just really never know where you can find them. But what I love about your approach is that you seem to already, you're like, oh, those flowers are going to spring up over there. I'm going to go over there and see what I can appreciate. Because it sounds like you were doing things just before everybody else came running after whatever it was. Well, something, I mean, none of these things, this was a team effort. I mean, for open notes, for example, we had absolute top down. The deputy secretary of the VA was like, I'm all in the head of nursing, the head of mental health primary care. Although I have to say we didn't ask permission from the physicians. It really grew and became a thing to do because of the demand of the patients and the families. It was actually trialed in 2000, probably the first ever patient access to the electronic record. And it was kind of a very, what we call klugy or awkward sort of interface. But they could get test results, they could see the notes. And it's funny, that was actually piloted in Portland, Leno, and I wasn't there at the time, but I heard the stories when I showed up. And it was very fascinating because what they set it up, they said, okay, we're going to have the physician approve it and give permission. And within a couple of weeks the duck said, I'm done. Just let 'em have it. And that actually was the VA way, which is to try something, throw spaghetti at the wall, see if it works, don't roll it out, do a phased implementation, try it in a few other places and then and really get that user-centered design and that feedback from that end user. And of course, nothing's perfect, but when I do talk to folks who are veterans and they do use my Healthy Vet, which is the VA's patient portal, they're pretty much, I love that thing. So it's pretty nice to be able to meet people's needs. The ultimate goal, You're using a term that I think is really incredibly important and that is end user. And you already talked about human-centered design and things that I think in medicine we're hopefully getting to, and it doesn't always exist because I think we've come at it from a place of we know what's best. We're going to tell you what's best. You just need to listen to us and you'll be fine. That's not really true. These are all people who live their lives. They know what's best for themselves. They need a conversation, they need some information, they need some perspective. And that's really what I think we should be doing. So as you alluded to earlier, how do we more effectively interface that communication and build that relationship so patients really feel empowered to do this work themselves, the ones living their lives. Right. Well, that's what participatory medicine is all about. It's a little bit of a mouthful, participatory, but there is a society for participatory medicine. There is a journal of participatory medicine, which I just stepped down as editor-in-chief. And actually, although my last task is we're about to publish a special issue on patient and consumer use of ai. But back to your question is I think even though it's better than it's been in terms of the traditional sort of paternalistic care, I think we still don't understand. We have things like shared decision making. It's like we're going to have this conversation and I'm going to give you choices, but that still doesn't get to where you need to do, which is first to understand that patient experience. And it is not just experience, it's actually expertise. Families, parents who are taking care of a sick kid, adults who are taking care of an older adult with P, they are experts in what is happening. Peer to peer support has been proven to benefit people who have issues and they get a lot of information that traditional healthcare doesn't provide. And why is that? Well, we sort of know why that is, because the incentives aren't really aligned. I mean, nobody gets paid to do that, and we're not really trained to do that. We sort of go part way, but I don't think we've gone all the way. And really we talk about patient-centered care around you. Sorry, I don't think that really gets to the real goal, which is to be a guide. People say, my patients, they're not your patients. Patients don't even want you to co-pilot with them. They're the plane. I mean, so much of what you're saying really resonates with me and the patients. First and foremost, the patients being experts. I mean, we can only know so much about what we know and the patients are out there living some of the things that we haven't even, we know nothing about or very little. And so we actually need that information from them. When I'm talking with a patient and I do virtual care, so I do virtual, I happen to do a virtual urgent care, although I'm in leadership with virtual first integrated behavioral health, primary care, urgent care, and I'm in their living room with them and their child is sitting next to them and they have a dog next to them and they're describing something like some rash. I'm like, I literally don't know what this is. So keep telling me what you know about this rash. Keep telling me what's the context. And then I look it up and then I go, oh, this could be this. It seems like it sort of looks like this. And it's a back and forth, and they're giving us the information we need to help us help them if we let them. And sometimes we can't. For whatever Reason, the knowledge Tom Ferguson who coined e patients, he believed that patients and families can teach us. And that's the fundamental value that I think is missing to a great degree actually. And one of I did, when I was working on tobacco intervention, I was taught by people who smoke. I was taught, and that colored everything I did. I'll give you an example. People, you see a person who smokes in the clinic and you say, okay, nicotine patches or this, that, or the other thing, counseling. You see them six months later, they're still smoking. But if you dig down and really understand what's going, they quit for a month. They quit for two months. And instead of learning and saying, okay, let's talk about that. Wow, how did you do that? If you ask that question that people just change, they'll relax and they change their whole demeanor because they're going in to see the clinician and there's a wall there. They know they're going to get lectured too. So one of our most important jobs is to lower that wall. And the way to lower that wall is to really learn from them and have them tell the story. So I think that's really important. And I'm sort of applying. We learned that with open notes. We learn initially actually, I was on the fence saying, oh, well, we don't really want to see people looking at, and there's still quite a bit of pushback from physicians. But we did the research and we listened to people. I said, well, yeah, there's too many words. And by the way, there's repeated stuff, copy and paste. I mean, they know this. But then they'll also say, well, I don't like some of that judgment. And that opened my eyes. And then they also would say, oh, it says right here that I need to get a repeat ultrasound and in six months and you didn't call me. So then the learning is that person not only is engaged and empowered, but they become part of the treatment plan. I'm trying to figure out ways to apply those learnings to food and nutrition. Still have a better way to go on that one. Well, yeah. So tell me about that. I mean, you are a food for Health ambassador and you work with the Fork Food Lab. And this is something that fortunately I think we're further along than we once were understanding that food is, food is just integral to health. We can keep putting medical medication, band-aids on people, but really if they start eating the right things, they're healing themselves from the, they're just integrating themselves more healthfully into the environment from the beginning. That's the best way to do it. And yet, it's still struggle. So tell me what you're doing. Well right now, I'm really in discovery phase as an entrepreneur. I did have my own, when I left the VA, I started a digital health company and had a lot of learnings from that. But you really have to do a lot of discovery to find out what's happening, where are the gaps, where are the opportunities, where are the opportunities at an individual level, at a community level, what kind of services do people need? What kind of products do people need? I mean, it's almost like it decades ago with when everybody was smoking, we would sell cigarettes at the VA and all the patients would be smoking at the end of the hall. I mean, that's kind of with all the food that's so unhealthy for us, including people who are on food incentives like Snap. And you can buy unhealthy food, and that's okay because the government doesn't really want to be the nanny state. And I agree with that. But we have a lot of places to go. I've just anchored myself to fork. I'm actually not working for them. But really advocating and sort of being an evangelist right now and really connecting locally, collecting nationally to see what is happening. And there's a lot of activity. There's a lot of opportunity, but we still have a long way to go. I've been talking about food for a long time, and my clinical practice, I did acupuncture, traditional Chinese medicine. A lot of what they do about healing is food oriented. And I think there's the people who always get it. There's the people who never get it. And then there's the people in between and trying to figure out that people in between. And how do we build engagement? And you're talking about being in the discovery phase and being an entrepreneur and trying to understand that group. How do you go about doing That? Well, I tend to categorize things and look at what's on the ground and the research. I mean, there is a tremendous amount of research. I'm part of a, Tufts has wonderful people and wonderful efforts. There's a Tufts Food and Nutrition Innovation Institute that fork is actually a participant in. So coming together and get it and learning from other people. I mean, there's the way I tend to look at it, I mean, there's tremendous work that's happening. And unfortunately right now is threatened, which is around food insecurity. So people who aren't getting, I mean, it's not even a question of healthy food, it's just a question of food. And healthcare organizations are now screening for that, which is wonderful. And trying to connect. You talk to the beginning about difficulty with navigating. We've got, there's a lot of work to do on figuring out how to make that seamless, how to do it in a way that's not with dignity. Those are big pieces in and of themselves. There's tremendous activity happening with culinary education and culinary medicine. It's happening at Maine General. It's starting to happen at University of New England. There's new curriculum that's going to be developed that's very exciting. So just sort of integrating some of this into our own teaching. But then on the sort of community intervention side, there's just, in a way, it's a lot like we did with tobacco. It's everything. Yes. And right. There's the policies. So starting to create reimbursement and coverage for these things. Some states are getting Medicaid waivers. California and Massachusetts are way ahead of us. When those things happen, things started rippling and organization starts providing food prescriptions and medically tailored meals, medically tailored meal kits for specific conditions because we know we can actually reverse and improve heart disease and diabetes. And I'm excited about moving beyond that and looking at things like mental health and other things. So that whole piece around creating the choice architecture to be able to deliver and people getting access to those things. Really just the policies, the education, and then the services themselves. And we got a long way to go, but I'm pretty excited about it. I can definitely see where the pup needs to go. One of the things that I'm Encouraged about right now is the idea that we finally seem to be more open to learning in ways that goes beyond strict quantification of numeric data. Because as a researcher and my recent doctorate, I did a lot of qualitative work. And I think where we are now with ai, we actually are able to more effectively quantify qualitative information. I think a lot of what you're describing or you're kind of in the field and you're talking to people and you're bringing in knowledge and you're listening to what people are having to say. I mean, I think that that's for me, where the richness lies, because you can get a lot of information from data, but data is really relevant to where and what is put into the system. And it's not always done well, but you can also get a lot of information from listening to people from actually sitting with them. And that's why as a clinician, I like to believe that I'm sort of alongside them. And I like to believe that we're sort of driving in the same direction. And when you're with your teenager and you just let them talk because it's not a power struggle anymore, you're just next to them. So as a researcher, are you feeling that same thing or I started as a sort of traditional quantitative health services researcher, and then with, when we did open notes, I did a qualitative study and I sort of fell in love with qualitative research because it's so rich. And really, again, it's another sort of yes, and because you want to triangulate that thing, those elements. But I would go even a step further and really talk about co-design and co-production. So thinking about nutrition and food for example. So just assume we have some service that allows food prescriptions or medically tailored meals for particular conditions. That's like getting a package at your door, right? Well, does that mean that you like it? Does that mean you want it? Does it mean you're going to consume it? And then when it stops, how are you going to be affected? Are you going to continue? And so back to sort, I think we have to get, this is where I think there's a wonderful opportunity to co-create the right kind of things, talk about end users with those end users. And we have to taste is everything. So I've seen very little research in the food as medicine space. There's some, but talking about taste and cultural preferences. I would also add, it's interesting, at Fork Food Lab, we have almost, we have over 80, almost a hundred food entrepreneurs. Several of them come from other cultures. A lot of that food's very healthy. It's very healthy. Different proteins, non-meat proteins, beans, rice. So I think co-creating with people, co-creating with communities, we can really end up with not just an effective pharmacy with an F, but one that's going to be received and utilized and have an impact. I think there's so much power in what you're describing. And I think that the idea of co-design and the idea of actually sort of more of an agile or design rapid integration test and continually evolving where we're going is it seems to me like that's going to be the most effective way to approach it. Because I think we tend to get kind of stuck in a model and be like, oh, we're going to do this for the remainder of the century, and that's just not where we are right now. And it goes back to this idea of choice architecture also, which I think wasn't even a thing until, I don't know, not that long ago, maybe a decade, 20 years, I'm not really sure. But the ways in which we position things to make sure that the healthiest choices are more likely to be pursued. And that is something that until we actually start doing this rapid design and we start co-designing, or it's only going to get so far, Most things, I think choice architecture has been around for a long time. It probably wasn't called that sort of data science. You talk to the statisticians about data science and they're like, well, we've been doing this for a hundred years. So the cigarette packages are a great example of choice architecture, right? The cigarette design. Yeah, I mean, they definitely had a sense of what was going to work. So you're right, you're right. But the way I look at it again is just to make the right thing easy, figure out ways to make people fall over the right thing, which is actually what we tried to do with the tobacco helpline when we connected every pharmacy to the helpline so that people could get free nicotine replacement therapy. And we had probably the highest utilization per capita, per tobacco user in the country. And I think a lot of it was because people wanted that. So to understand what people are really interested in and what they're willing to take that first step with and then make it easier for them to get it, I think those things have, that thinking has been around for a very long time. I think we're just repackaging it. But I do believe that the whole sort of concept of co-production, co-design, participatory design is much newer. And I would also say that there's different levels of that, and there is a science to that, patient-centered outcomes research and many other organizations across the globe, actually the UK has a very robust enterprise around patient and public involvement in research and care. So I think that's sort of more contemporary. I just wish we could keep talking forever. There's just so many different intersections and I appreciate your taking the time to at least take a small bite or small bites, No pun intended. No pun intended at all. I didn't think about that ahead of time, out of kind of what we're trying to do, but I think it's an important time that we're living in and honestly, being a physician where these constellation of things are all kind of starting to come together, it always brings me hope to talk to other people who are kind of exploring in the space. So I appreciate the conversation. Thanks so much. It's been fun. Yes, it has. I've been speaking with Dr. Susan Woods, who is many, many things, but currently she is a Food for Health ambassador who has an affiliation with the Fork Food Lab here in Portland. I encourage you to look into work that's being done as Food for Health, but also many of the things that we've talked about today and thinking about how we can all effectively participate in our own health and do it in a way that really is furthering the health of the communities, which is really what we're trying to do. We hope that you come, celebrate and explore creativity in the human spirit, perhaps with us at the Portland Art Gallery of one of our openings. I didn't even get to talk with you about Eric Hopkins, but that'll be a teaser for our future show between Sue and I and really thank you for joining us here today on Radio Main, and thank you for joining us. Thank you.