Health Hats, the Podcast
Generation Patient. Hope for Young Adults Living to be Able
Building a powerhouse advocacy org for young adults with chronic conditions, Sneha Dave shares her path & vision: skill building, peer support, events, policy.
Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post.
Subscribe to Health Hats, the Podcast, on your favorite podcast player
Please support my blog and podcast.
Episode Notes
Prefer to read, experience impaired hearing or deafness?
Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here
Contents with Time-Stamped Headings
to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript)
Transition from pediatric to adult medical care 04:47
Transition in agency, decision making 06:28
Transition from navel-gazing to community focus 08:39
Building community – Generation Patient 10:21
Managing yourself while advocating 12:54
Yikes, it’s a business, too 15:31
Scope – Higher education 18:35
Policy – FDA User Fee Agreements 25:22
Policy – Direct-to-consumer advertising 26:47
Policy – State-based drug pricing 27:47
Crohn’s and colitis young adults’ network 28:18
Patients launching research 29:44
The challenge and benefit of keeping your ear to the ground 38:00
Please comment and ask questions
- at the comment section at the bottom of the show notes
- on LinkedIn
- via email
- DM on Instagram or Twitter to @healthhats
Credits
Intro and outro music by permission from Joey van Leeuwen, Drummer, Composer, Arranger
Web and Social Media Coach Kayla Nelson @lifeoflesion
The views and opinions presented in this podcast and publication are solely the responsibility of the author, Danny van Leeuwen, and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute® (PCORI®), its Board of Governors or Methodology Committee.
Inspired by and grateful to Janice Tufte, Robin Newhouse, Aaron Carroll, Sara Lorraine Snyder, Morgan Gleason, Marlajan Wexler, Fatima Muhammed Ighile, Lauren Reimer-Etheridge, Mallory Smith, Jill Woodworth, James Harrison
Links
Generation Patient, Empowering Young Adults with Chronic Medical Disabilities
A New Generation in the Fight for Fair Drug Prices
Inflammatory Bowel Diseases
Camp Oasis, a camp for kids with Crohn’s and colitis
Ehlers Danlos Syndromes
Postural orthostatic tachycardia syndrome
Helmsley Charitable Trust
PDUFA prescription direct user fee agreements
2022 PCORI Annual meeting
ICER’s Midwest CPAC Midwest Comparative Effectiveness Public Advisory Council
Aaron Carroll’s Incidental Economist
Janice Tufte of Hassanah Consulting
Related podcasts
https://health-hats.com/ya_transition/
About the Show
Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once. I’m the Rosetta Stone of Healthcare. We will listen and learn about what it takes to adjust to life’s realities in the awesome circus of healthcare. Let’s make some sense of all this.
To subscribe go to https://health-hats.com/
Creative Commons Licensing
The material found on this website created by me is Open Source and licensed under Creative Commons Attribution. Anyone may use the material (written, audio, or video) freely at no charge. Please cite the source as: ‘From Danny van Leeuwen, Health Hats. (including the link to my website). I welcome edits and improvements. Please let me know. danny@health-hats.com. The material on this site created by others is theirs and use follows their guidelines.
The Show
Proem
In my first professional job as a Visiting Nurse in Holyoke, MA, in 1976, I wanted to establish a walking practice in the inner city. Veterans on the team said it’s not safe and can’t be done. “What do you mean it can’t be done? Of course, it’s safe. It can be done!” I was so young, 24. Now I’m usually the oldest in the room (unless I’m with my wife, who’s older than me). I thrive on youthful energy, people who take up the mantel of progress and charge forward with an energy I only faintly remember. Energy, ideas, single-minded stubbornness, connections into a world I possess only faint familiarity.
Introducing Sneha Dave
Janice Tufte of Hassanah Consulting knows my appreciation for young adults with chronic and complex challenges and disabilities and my fascination with business-successful advocacy organizations financially independent of pharma and industrialized medicine. Janice introduced me to Sneha Dave, 25, CEO of Generation Patient, Empowering Young Adults with Chronic Medical Disabilities. Generation Patient facilitates events, online programs, and advocacy initiatives for young adults living with chronic and rare conditions to ensure they have the opportunities and resources to thrive. Generation Patient focuses on peer connection, advocacy, and access to educational information and resources as fundamental pathways to empowerment. Let’s meet Sneha.
Podcast intro
Welcome to Health Hats, the Podcast. I’m Danny van Leeuwen, a two-legged, cisgender, old white man of privilege who knows a little about a lot of healthcare and a lot about very little. We will listen and learn about what it takes to adjust to life’s realities in the awesome circus of healthcare. Let’s make some sense of all of this.
Health Hats: Good morning, Sneha. How are you today?
How are you? Sneha Dave: Good. I’m good.
Health Hats: I’m very excited to be talking to you. I think it was Janice Tufte who introduced us, right?
Sneha Dave: Yeah. A few weeks ago, I think.
Health is fragile
Health Hats: Yeah. When did you first realize health was fragile?
Sneha Dave: Yeah. I first realized health was fragile when I was about six years old. I don’t think I realized it at that time until I got a little bit older. But I realized things wouldn’t always be quote-unquote normal for me when I was six. I was—first diagnosed with ulcerative colitis, and all the scopes that came about, all the procedures, all the different medication trials, all the big pills that I had to swallow, I swallowed about eight per day. And obviously, the remnants of swallowing eight big pills is that you don’t have an appetite. And so, you lose weight and all these different kinds of cycles I started realizing at an early age. But I wasn’t as sick until middle school, when I had the biggest flare-up for ulcerative colitis. And I was in a period of isolation for a few years. From middle school to the middle of high school, due to the severity
Health Hats: isolation?
Sneha Dave: Yeah. Yeah. And isolation, the way I define it, is different from what we have right now because of the pandemic. But I would rarely go to school. I didn’t have a lot of friends. I was very much focused on my health. So, staying at home was the main thing I did cause I was so fatigued all the time. I was so weak. Anytime I thought about going to the grocery store was so difficult because one of the symptoms I had was constantly having to use the restroom. This caused a lot of anxiety for me to leave the house because I used to have a lot of accidents. And that isolated me, I think, both socially, but also physically confined to my house for a few years.
Transition from pediatric to adult medical care
Health Hats: Yeah. Wow. When did you make a transition from pediatric care to adult care?
Sneha Dave: Yeah. So, this is interesting. I am from Indiana. I’ve gotten care in Indiana my whole life, and I go to Boston Children’s and Texas Children’s, and I see all these hospitals, and they have robust transition and transfer of care programs. But for me and probably most young adults, the transition is not very smooth. There’s no hard stop going from the Peds system to the adult system. But I also think it’s challenging to establish primary care, for example, coordinating rheumatologists versus gastroenterologists and just so many different doctors. So, my transition, I think, was very tumultuous in that I didn’t have care like solid care for about a year when I went to college. And that was harmful to my health undoubtedly. Because I had this newfound independence at the same time, trying to coordinate my care and manage my health. And I was also coming off of major surgery. I had colectomy surgery, which was the removal of my large intestine during my freshman year of high school, and a few smaller surgeries followed. But I think my transition and transfer probably happened about three years ago. I’m 24 now. Probably around when I was 21 is when I officially transferred to adult care.
Transition in agency, decision making
Health Hats: Wow. What you’re talking about is not just different clinicians. But you’re also, are you also talking about making decisions for yourself? How did that transition go like a transition of your agency and your decision-making?
Sneha Dave: Yeah. The first thing I thought of when you said that was health insurance, for example, and that is the most challenging. The first time I called my own health insurance company was during college. And I thought it would be a quick 10-minute call to get one of my new infusions. And it turned out to be hours and hours on the phone with this insurance company. And that was the first time I realized that the administrative part of being a patient would take a lot more time now that I had to do everything by myself. And my mom, I was so lucky. She was my primary caretaker when I was sick. And so she took care of all that. But I also didn’t have a lot of room to learn for myself. And so a lot of you know, now I see a lot of transition programs and doctors that meaningfully make that transition and think about it early on. And they start from 13 years old, and they start asking the patients what medications are on. Do you know the dosage? These small questions add up. And When I was making calls for the first time, I didn’t even know how to fill a prescription by myself. And so just these little things were things I had to learn suddenly. And, when you’re young and must learn all these different things at once, a lot of these things will not happen. And yeah, I think that was a big challenge. And I see it’s like learning for many of our community members, having to learn within a short timeframe. Our parents can no longer talk to the insurance company or have that hands-on approach.
Transition from navel-gazing to community focus
Health Hats: So, now you’re talking about the community. So how did you transition from gazing at your navel and thinking about yourself to thinking there’s more than just me like, how did that happen?
Sneha Dave: Absolutely. I think part of it was that I sought so much support. And it was tough because the support groups where I was were all comprised of people who were significantly older than me. And so, it was tough to relate on many levels in terms of being so young and sick for the rest of your life. I was seeking that support. I started my first initiative when I was around 13 years old. I started the Crohn’s and Colitis Teen Times, which was just a newsletter for young adults with IBD in the state of Indiana. It was my late best friend and me. He was the only person I knew.
Health Hats: And what does IBD mean?
Sneha Dave: Oh yes. Inflammatory Bowel Diseases.
Health Hats: Okay, good. Thank you.
Sneha Dave: Yes. And that inflammatory bowel diseases include Crohn’s and colitis.
Health Hats: So, you did a newsletter?
Sneha Dave: Yeah. The newsletter features things like other young adults with IBD. We interviewed doctors. We did recipes. Just some really small things that just made it feel like, yeah you, there, there were other young people out there that were and
Health Hats: Who were we?
Sneha Dave: Yeah, so me and my late best friend, Cory, he passed away with Crohn’s disease and osteosarcoma.
Health Hats: oh man?
Building community – Generation Patient
Sneha Dave: Yeah. It felt like it was just us a lot, and we went to Camp Oasis, a camp for kids with Crohn’s and colitis, but that only happens one week per year, right? The rest of the year, it’s what is there? And, also this was ten years ago when social media was not as big. Kids did not have phones all the time. And we were seeking that. So, we mailed these newsletters, and then it grew from there.
Health Hats: I’m sorry, I’m interrupting, but did it with people you met at camp, like how did you identify the group of people to put, yeah. Did you develop your mailing list?
Sneha Dave: Yeah, so initially, it was through small sort of IBD conferences that were around the area, and we did develop a mailing list through Camp Oasis as well. But I would say mainly it was through conferences and fundraising events and that sort of thing. And then we developed a website from there, and obviously, we have a web platform it’s a lot easier to find. We then started having a certain international audience as well. And what was interesting was that there were young adults with Lupus, for example, or other conditions that were viewing the content. And I think that was in part because they were seeing other young people who are sick, who may not have the same condition, but were just facing similar societal, systematic challenges of entering adulthood. And during my freshman year of college, I created the Health Advocacy Summit, which is now Generation Patient. And we are not disease-specific. So, we have young adults from everywhere from Lyme Disease, Ehlers Danlos Syndromes, POTS (Postural orthostatic tachycardia syndrome), Lupus, and arthritis. You name it: all the chronic and rare conditions. And we started as an event in October 2017 in Indiana, and that was cool cause it was in person. There were only about 14 attendees, but those attendees were all from Indiana, all young adults with various chronic and rare conditions. And many of them had never met someone their age with a chronic condition. And so that was cool to have a safe space, and we didn’t include adults; this was solely for young adult patients. And I think that brought a lot of intimacy and honest conversations. Yeah. Very quick friendships, and so that was cool. I’m going to pause there just to make sure you. Yeah,
Managing yourself while advocating
Health Hats: yeah, Wow. I know I was being funny with the navel-gazing part, but I do know, even for myself, that I go through periods where I just don’t have the energy to look beyond my skin. And then, like you, I’m an activist, but one of the things about chronic illness is that it goes in cycles, And so how so it seems what you’ve done is you’ve developed something that has not necessarily a life independent of you, but maybe you’re the linchpin. But it’ll go if you have to check out for a while. Yeah. How did you grow that? That the so that you could feel comfortable calibrating your energy for external dealing with your stuff.
Sneha Dave: Yeah. This is an interesting question because I’ve thought about this a lot. And I think part of it is that I’ve lived with ulcerative colitis since I was six. It’s all I’ve ever known. And I think it, in that regard, is somewhat of a blessing to have been diagnosed so early because I don’t have this life beforehand to mourn or think about what could have been. I’ve adapted. I think a lot in terms of how to cope with low energy levels and how to do things. And I know that rest is essential. And I preach that, but I don’t always follow that. But I think part is learning what works for your body and going from there. And I think for me, my parents have always been, for good or for worse, have been really in denial of the fatigue that comes about with IBD. Inflammatory bowel disease until recently. And so, really thinking about how they’ve always just supported me, you can do whatever you want and accomplish whatever. But I think at the same time again. I think it’s just learning your body. And I think it’s tough if you’re diagnosed in adolescence or young adulthood because you must relearn everything. And there’s a lot of grief that comes with that. So, I think being diagnosed at such a young age is different for me in many ways.
Yikes, it’s a business, too
Health Hats: Oh, wow. So, you’ve so you have a business. This is a business. This isn’t just advocacy. I don’t mean just let’s take scratch that. Yeah, it is advocacy, and it’s a business. So how was there a point where you realized, oh my God, this is a business I need, I have a budget? I have a strategy, marketing. Do you know what I mean? Can you talk about how you grew into I’ve got a business? Oh, my goodness.
Sneha Dave: Yeah. Every waking minute during college was spent on the Health Advocacy Summit called Generation Patient. But it wasn’t until my senior year of college that we received our first significant grant, and that was from the Helmsley Charitable Trust. So they’re a foundation based in New York City. And so we were funded under one of their disease arms. And that really, I think, in many ways, gave us credibility and the ability to grow and scale up what we were hoping to do. And just to provide insight into how we operated before our grant funding. Yeah. Because we did that like for so long. I mean, we would do our summits for under $500. We would try to get all the in-kind donations we could get, like all the food donated. We were savvy with saving and ensuring we could do things under a minimal budget to have the highest impact. But graduating college, I can’t be doing all this for no cost because I also need financial independence. In addition, Sydney, who’s our director of operations, joined, I think, my sophomore year. Sydney Reed. She’s based in California and joined my sophomore or junior year of college. And she’s been instrumental in growing the web platforms in addition to a lot of our branding but finding unique ways to create outreach. And so, having staff that can dedicate their full time is crucial. So, we have about three staff, including me, this year. Wow. Yeah. We’re growing a lot.
Health Hats: You’ve got HR issues on top of it.
Sneha Dave: Yeah. I’m the one who deals over with all that. So hopefully, that’s going well. No, but it’s a tight-knit team. Julia had just joined and had been interning with us for about a year. She just is a recent college graduate. She joined us, but it’s been exciting thinking about different areas we’ve been going to and how to receive grant funding for those areas.
Scope – Higher education
Sneha Dave: Just to give you an idea, a couple of the areas we’re in are higher education. So, we focus a lot on increasing access and retention of chronically students within these institutions. Okay. We were thinking about how in the past and current accommodations like thinking about fatigue and more dynamic natures of our conditions, how it’s tough to seek accommodations for these types of things within institutions without being labeled as lying or just wanting to get out of certain situations. And so we’re trying to think about that. And I think the pandemic has been great for nothing but opening up opportunities like flexible education and flexible work, which the disability community has advocated for years. But it has shown that these types of modalities are possible. And we are focusing on that with our higher education work.
Scope – Peer support
Sneha Dave: Then we have peer support meetings. We have about seven per month. We’ve been, we’ve done a little over 300 over the last two years, a couple of years at this point.
Health Hats: Wait a minute, 300 what?
Sneha Dave: Peer support meeting. We and that has been so interesting. It’s been a consistent sort of support mechanism. And I think peer support is one of the most undervalued tools we use within the medical system if you think about it. Relatively it’s not difficult to put on, and it’s not financially going to drain anyone. Whereas, and I don’t want to compare this to real mental healthcare, real mental healthcare therapists, psychologists, and psychiatrists are expensive and difficult to find. If there’s anything else available, like peer support, that can at least at the very least reduce isolation and create a sense of community. That can be huge.
Health Hats: Yeah, I’m totally with you. I spent many years working in behavioral health, which gave me a genuine appreciation for peer support, and I don’t think it is at the very least, but it’s at the very most. When you think about it, how much is medical? Most of you deal with life, and professionals aren’t that good at life.
Sneha Dave: Yeah, totally. Yes.
Health Hats: It’s not their expertise, and we shouldn’t expect it to be their expertise. But peers, it is, and just have that anyway. So, Generation Patient is your umbrella organization? Yes. That’s the business. And then you do peer support. You do conferences. You do policy work. Tell us a little more about Generation Patient and how that operates.
Scope – Events
Sneha Dave: I mentioned the higher ed work and the peer support meetings that we do, but in addition to that, we do events. Before the pandemic, we were supposed to be in about six states, but all those have been canceled since March 2020. but we have done two international virtual summits where we bring together a little over 300, 350 young adult patients from around the world.
Health Hats: Oh my God, isn’t it great?
Sneha Dave: Yeah, and it’s cool to see how big our community is and how much it’s growing. And I think just that sense is exciting to have that feeling of intimacy with other people you might not have known beforehand but have been brought together by a similar circumstance. Our past two summits and our third one is coming up this September 29th to October 1st. Some of the topics, just to give you an example of
Health Hats: Another virtual session?
Sneha Dave: So, we have topics from body image, with a chronic illness to entrepreneurship, with a chronic illness higher education, mental health, sexual health. Yeah. We have this set.
Now a word about our sponsor, ABRIDGE.
Record your health care conversations with doctors and other clinicians with Abridge. Push the big pink button and record. Read the transcript or listen to clips when you get home. Check out the app at abridge.com or download it on the Apple App Store or Google Play Store. Let me know how it went!”
Scope – policy
Health Hats: We were thinking about your policy arm. There’s way too much to talk about here. But then, when you think about the policy part, what is your Generation Patient focusing on these days in policy?
Sneha Dave: We received grant funding to be able to engage in policy this past January. And one thing about Generation Patient, we are industry-independent. We’ve declined all funding from pharmaceutical, insurance, or hospital industries. And that’s, I think, put us in a unique position within the patient advocacy space. Because if you look at the budgets of many of these major foundations, there’s no. Millions from the industry. And often, they’re silent on key issues of drug affordability. Like right now, we are probably in the most significant moment of drug pricing history. And today, I believe the bill will go to the house for the Inflation Reduction Act, which is huge and probably the largest negotiating. Probably the most significant loss for the pharmaceutical industry in decades. And so it’s fascinating to see these big groups’ silence when there’s so much funding coming from industry. Nevertheless, we are focused on a few different issues. One is with the user fees and the prescription drug user fee agreements with the FDA. I’m not sure if it’s worth explaining what they are because it can get very confusing, but in brief, I’m going to call these user fees UFAS.
Policy – FDA User Fee Agreements
Health Hats: What? UFAS?
Sneha Dave: They’re known as PDUFA. There are four different user fee agreements. But the biggest one we have been working on is the prescription direct user fee agreement. And these pieces of legislation happen once every five years. And 2022 is the year. And it is a must-pass bill because a large portion of the FDA’s budget comes from these user fees. And these user fees are paid by, for example, the pharmaceutical industry whenever they apply to the FDA. But what’s interesting is when these user fees pass, they must pass. There are a lot of opportunities to change and to mandate more specifics from the industry. So that might include more clinical trial transparency or reporting requirements. So a couple of things we’ve been advocating for within the user fees have been increasing enrollment and understanding drug disposition for adolescents and young adults with chronic conditions. If you look at peds and adult trials, there are these two sorts of demographics that we haven’t looked at adolescents and young adults as a unique group, as we haven’t looked at older adults as much.
Health Hats: Yes. And so really, and sometimes even women. Which is like crazy. That’s not a rare condition being a woman.
Policy – Direct-to-consumer advertising
Sneha Dave: The second thing is direct-to-consumer advertising on social media. We’ve been very concerned with the lack of oversight and regulation. Oh, yeah, the pharmaceutical industry. And it’s interesting because there’s a recent Duke workshop in, I believe, November of 2021 that named young adults or adolescents and those with chronic conditions as the most vulnerable on social media. And we work at the intersections of these two demographics. And we’re very concerned with the emergence of these social media advertisements that look like they’re targeting our age in the patient demographic. And we are trying to work to get FDA to release updated guidance. The last relevant piece of advice we found was from 2014, which is like ages and ages in social media. And that’s something that we’ve been working on as well. And that is more from the regulatory side as well.
Policy – State-based drug pricing
Sneha Dave: The last thing very, quickly, we also are working on state drug affordability issues. So, there’s a lot of momentum for state-based drug pricing and creating prescription drug affordability boards on the state level. The first prescription drug affordability board was created in Maryland, and I believe in 2019, but I’ll have to double check on the exact year. It’s a novel concept, and it’s fascinating to give states more power to hold industry more accountable.
Crohn’s and colitis young adults’ network
Health Hats: So, I have two more things. The first is what should we have talked about that we haven’t?
Sneha Dave: I think we covered a few different things, a little bit of a lot of different things. I can discuss our last program, the Crohn’s and colitis young adults’ network. Okay. That is our only disease-specific programming. It’s focused on young adults with inflammatory bowel diseases, Crohn’s, and colitis. And we are launching the fifth year of our fellowship program. Our fellowship program is for young adults with IBD from around the world. Each year we select fellows. This year we have fellows from Ethiopia, India, and Dubai, in the US, and they produce monthly content for our website. They hear from monthly speakers on a variety of topics. We provide them with a small stipend, and then we partner with the US-based IBD conference to bring them, whether virtually or in person and have them advocate for what the next generation of IBD patients are looking for in terms of treatment options. What are some of our most pressing needs now? So again, yeah, this is our fifth year that we’re launching upcoming, and we have a couple of other programs that we just launched yesterday through the Crohn’s and colitis young adults’ network,
Patients launching research
Health Hats: What would you like to ask me?
Sneha Dave: I would love to know from you, especially with your sort of work in research, what the most pressing needs you feel are for patients to get involved in launching research studies by ourselves, and also giving more literacy about the research process. Because what I’m finding is we are all young adult patients working organically on a lot of this work. And one of the challenges that we face is we have so many thoughts about research studies that we feel have not been addressed for young adults. But how to start that? I think that’d be helpful for me too well.
Health Hats: I think what you’re doing, which is attending the PCORI conference, is a good start, and I will. I will introduce you to Nakela Cook, the Executive Director, and Kristin Carman, the Director of Public Engagement. I think getting hooked up at PCORI would be helpful. But if I were to say what the most significant thing is, I think it’s like developing relationships in research. So right now, significant funding for research routes through academic medical centers because they have experience applying, they have experience managing the research teams. So, one of the things I do is advocate for having people with lived experience every step of the way. But it’s a whole different business. It’s a different language, and like the episode, I’m producing for Sunday, I interviewed a fellow who’s a researcher and a firefighter. And so he’s interested in research that helps to answer questions that first responders have? And I think you’re describing young adults’ questions that research could help inform. None of that happens fast. If researchers are required to or want to include people with lived experience on their teams, it’s unfamiliar. It must build. So, it builds, I think, through relationships. And I believe that one of the things your team might think about is. I’ll bet there are people in your community who are already attending school and are junior researchers. I think first, it’s identifying that and building teams where the budding researchers are members of a team of people with lived experience. I’ll bet the Indiana University; you’re from Indiana, right? I could introduce you to the Dean of Nursing at Indiana University. And I’ll bet like now I’m speaking for her, so that’s always dangerous. But I’ll bet she could connect you with researchers who are like Aaron Carroll. Do you know Aaron Carroll?
Sneha Dave: Yes, we serve on ICER’s Midwest CPAC together.
Health Hats: Yes. So, he’s a guy who what does he have the incidental?
Sneha Dave: Oh, the Incidental Economist.
Health Hats: Yes. Thank you. And so, what I’m saying is that there are people who it depends if you’re willing to bridge the age span that there are people who have experience here and have some humility and are not necessarily interested in their primary thing isn’t their funding or their power. But there are people who this is what they’re good at, and I know somebody at the University of California in San Francisco. Some researchers have expertise in engagement and partnering. I think it’s finding those people and building relationships and then thinking about, okay, now, What I’m going to help and getting help. And how do you formulate the question? You already know how to build coalitions. That’s a crucial part. But how to formulate your questions about life into research questions? And then think about where the money is. What does it take to get the money? What kind of team do you build? Then, you invite researchers in. I would be willing to participate somehow because I feel I’m on the other extreme. I’m 70. I have this podcast. You’re my guest, so this is something I care about. And again, I have networks that you don’t have yet. I think that’s the key. And then you’re smart. You have a business. You have a network. That all work itself out. I think it’s building the team. You are inviting people to join you. And then you and yours control it as opposed to the academic medical center controlling it. And they invite you in. It’s like you invite them in. It takes time. You didn’t do your policy work, thinking it was going to happen yesterday. You’re thinking about ten years down the line, there’s stuff today, and there’s stuff that will take time. You look for the right moment to leap. This is very exciting. I signed up for your newsletter. Obviously, I’m not a young adult. And I’m not going to be around when your conference is, but I would’ve loved to lurk. Yeah.
The challenge and benefit of keeping your ear to the ground
Health Hats: Because one of the things that’s hard and you’re, let me be so bold as to say so now you’re running a company and the higher you get, the harder it is to keep your ear to the ground. Yeah, I find, so here I am. I have I’ve been involved in PCORI for all these years. Twelve years and I’m on the board as a patient caregiver stakeholder. To me, the challenge is how do I keep my ear to the ground. How do I connect with people like you? And hear what’s important so that I’m advocating. Not just because I’m full of myself and think I know stuff. But I am full of myself and think I know stuff. Do you know what I mean? You need a reality check, and you’re going to find that you come from this world, but you know what? You’re 24 now. And the 13-year-olds are going to think differently. It’s like you said earlier. It’s different. They’ve come through COVID, which you didn’t come through.
Sneha Dave: So much has changed with the adolescent demographic. A considerable part of that is because of social media. And it’s very scary. Honestly, we see a lot, but I think what you’re saying is true. And it recognizes that you have the experience but don’t have all the experiences. And we do our virtual meetings, and I attend at least two of the seven, at least four of the seven per month. It’s enlightening for me. And it’s also interesting because I receive a lot of support from the virtual meetings we put on as well. So, it’s very helpful for me too. It is selfish in some ways because I’m getting so much support too, but it’s amazing.
Health Hats: Why is that selfish? Or, yes, it is selfish, and what is wrong with selfishness? So whatever way you want to.
Sneha Dave: It is amazing, and it is important to keep hearing what some of the most pressing needs are from our community. It has been instrumental to have feedback on what we’re doing every step of the way. And it’s precious.
Health Hats: Yeah. I’m here for you.
Sneha Dave: Yeah. Thank you so much. You appreciate that. We’re still learning so much,
Health Hats: Feel free to lean on me and use me. Yeah. I’m likely to say yes. I don’t say yes. It depends on my bandwidth and my health and stuff like that, but I’m likely. I think what you’re doing is necessary.
Sneha Dave: Yeah, thank you. I can. It’s so necessary.
Health Hats: I look forward to meeting you in DC in October. And I will try to introduce you around.
Sneha Dave: Yeah. That would be amazing. I’m excited. I’ve looked to going for a few years now. I learned about it through the Association of Healthcare Journalist conferences I attended in college and have just kept up with the work. So, I’m excited to learn more about PCORI.
Health Hats: Great. All right. Thank you so much. I appreciate this.
Reflection
I admitted to you dear seeker that one of the best parts of nursing and podcasting is engaged nosiness. Dropping in for moments into people’s lives and sharing their hopes and fears. Dropping into Sneha’s life I see her tenacious strength, her inquisitive wisdom, and her charismatic leadership. Pow!
Sneha’s not alone, growing a supportive and learning community. She has her core partners and many volunteers. Her business prospers and she shares the wealth. Ka bam!
What can I say? It can be done. Take strength and charge on.
Podcast outro
I host, write, edit, engineer, and produce Health Hats, the Podcast. Kayla Nelson provides website and social media consultation and creates video trailers. Joey van Leeuwen supplies musical support, especially for the podcast intro and outro. I play bari sax on some episodes alone or with the Lechuga Fresca Latin Band and Morningside Studio’s Saturday Morning Blues Funk Band under the direction of Dan Fox and Peter Cicco. I’m grateful to you, who have the most critical roles as listeners, readers, and watchers. See the show notes, previous podcasts, and other resources through my website, www.health-hats.com and my YouTube channel. Please subscribe and contribute. If you like it, share it. See you around the block.
Visit Podcast Website
RSS Podcast Feed
Subscribe
Share
Add to MyCast