Podcast appearances and mentions of clara health

Tom Rhoads (00:03): Welcome to "People Always, Patients Sometimes". I'm Tom Rhodes, CEO of Spencer Health Solutions. Our podcast is focused on many of the thought leaders and executives that are calling for change and how we design and run clinical trials. We have also had patient advocates on the program like Jen Horonjeff, of the Savvy Cooperative, Pam Gavin of NORD and Barby Ingle of the International Pain Foundation. Our mission at Spencer Health Solutions is to ensure that patients are at the center of everything we do. So we are pleased to kick off a series of interviews with more patient advocates, influencers, and organizations that are focused on bringing the patient experience to the forefront of the conversation in healthcare. Kicking off our series is a conversation with Lilly Stairs and leading patient advocate advisor and founder of Patient Authentic. I know you'll find her conversation with Janet Kennedy, as interesting as I did. Janet Kennedy (01:01): "People Always, Patients Sometimes" podcast is about the change agents in healthcare who are focused on patient experience, patient engagement, or disrupting the process of clinical trials to be more patient-centric. Our guest today certainly fits that bill. Lilly Stairs is a nationally recognized patient advocate, speaker, author, and innovator. She has recently founded a new company, Patient Authentic, which I look forward to hearing more about on "People Always, Patients Sometimes." Welcome to the podcast. Lilly! Lilly Stairs (01:33): Thanks so much for having me, Janet. It's always a pleasure to connect with you. Janet Kennedy (01:38): I think entrepreneurship is a big challenge and as a patient advocate where you're already facing a series of your own personal challenges, as well as challenges in the workforce. Wow. What made you think about starting your own company? Lilly Stairs (01:55): Well, Janet, I will also say that I didn't plan to start a company the year that we ended up with a worldwide pandemic, but here we are to add that challenge to the list too. But yeah, I've always had an entrepreneurial spirit. From a very young age, I was always creative and started choreographing for a kids' theater program and took the helm there. And then in high school, I started an anti-bullying program that ended up touring around our local schools in Massachusetts. When I got to college that is when I started my patient advocacy work. And because I was diagnosed with a few different auto-immune diseases I started a campaign to raise awareness about people who were living with auto-immune diseases. There are an estimated 50 million Americans who are living with auto-immune diseases. It was called the 50 cents for 50 million. I have spent most of my career in health tech startups. It just felt right to jump in and take the plunge and make a bet on myself and start Patient Authentic. Janet Kennedy (03:17): I imagine your first 30 days you were feeling pretty euphoric and then February came and you probably started to be a little nervous. So COVID, how has that impacted your life and impacted your work? Lilly Stairs (03:31): Well, I think it's really, and I don't think this is an exaggeration, it's turned my life and everyone's lives upside down. And I, as somebody who is considered high risk because I am immunocompromised due to the medication that I am on, which depresses my immune system to treat my auto-immune diseases is certainly scary and carries a lot of weight. I am fortunate that from a work perspective, all of us in healthcare, I think have been quite busy, which is important. We've stayed busy trying to do what we can to support patients. And so from a work perspective, all has been really good. It's just that we've got a lot of COVID focused projects now. And then from a personal perspective, I think that honestly, it's been hard because it's isolating and I think a lot of people are feeling that, and there's always the fear that people are not taking it seriously enough, especially as someone who is high risk. Janet Kennedy (04:30): I understand totally what your experience is. Like my two nieces are in New York City who works at Trader Joe's and unfortunately, the misapprehensions and the willful lack of understanding is really frightening for them. One of them actually did get COVID, was fortunate that it felt like the flu, and got over it, but then found out later she had definitely had it. It has changed everything in our lives. So I'm curious as a patient advocate, and I know you are talking to patients constantly, what is the general mood among the folks that you're talking to? Are they finding that this is an incredibly scary time or are they finding that even the discussion of "at-risk" is raising awareness and making people a little more sensitive or empathetic to folks who have challenges? Lilly Stairs (05:27): Well, I have to say, I think it's a mix. And I would say generally speaking patient communities across their pubic areas have certainly been vocal about concerns that people are not taking COVID seriously enough. And I think that there are some really baseline things that everybody could be doing, like wearing a mask that would put a lot of those fears at ease. I will say warranted fears because for some contracting COVID is really a death sentence when you are somebody who's high risk. I'll be honest in saying that for me personally, I live in balance. I live in breathe and balance. That's how I operate. And for me, I've been cautiously optimistic and I'm cautious in living my life. So I don't just sit at home. I will go out, I wear a mask, but I'll go do outdoor dining in Boston. We have some awesome outdoor dining and, you know, see friends at a socially distant level because I think what we're seeing with this pandemic is a mental health pandemic kicking in because so many people are struggling with the isolation and the loneliness. So I try to weigh that out. And I think that a lot of other people in the community do that too. And it's really just about finding that mix of being safe and taking care of yourself. Janet Kennedy (06:50): I agree very wise words. Now let's back up a little bit and talk about Patient Authentic. I don't know what your company is doing. So tell me a little bit about it. Lilly Stairs (07:01): Absolutely. Well, you know, Janet, I think that I'm still learning what my company is doing and I don't know if I should be saying that, but here we are. Because I think it's evolved so much since I started in January. And a lot of that is largely because of COVID, but also because I've just ended up in places I didn't expect. And so the way that I like to talk about Patient Authentic is that it is a hybrid of healthcare marketing and patient advocacy. So all of my work is grounded in developing patient-centric deliverables alongside patients. And I'll talk to you about a few projects I'm working on just to give you a flavor of what it is that I'm doing at Patient Authentic. So I am leading patient advocacy for a health tech company and that's Clara Health, which is in the clinical trials space. Lilly Stairs (07:50): And I know that Spencer does quite a bit of work there too. I am developing and running a social media campaign with oncology patient influencers to promote a nutritional supplement, which helps to aid in the healing of mouth sores that have been developed from chemo and radiation. So out of that, we've developed the hashtag #MoreThanASore campaign, which is all about how sores are so much more than just a sore and they really impact the quality of life. And so there's the marketing in me coming out through that campaign. And then, you know, I'm working with some patient advocacy groups as well. So I'm building a masterclass to help train patients from across therapeutic areas and how they can be effective advocates on a policy level. So on Capitol Hill and at FDA advisory committees. Finally, I'm also supporting the development of a COVID-19 resource hub for the transplant patient community. My projects span across therapeutic areas and they are focused, at the heart of them, they are working with patients to create something, Janet Kennedy (08:56): Oh, that's excellent. Now, is this a single consultancy? Or do you have other patient advocates that you will bring in to support some of these projects? Lilly Stairs (09:04): Primarily it's a single consultancy, but I do often bring in patients who are paid because patients should always be paid to support the work. Janet Kennedy (09:14): I totally agree. Well, let's talk a little bit about some of the work that you've done in the past and hopefully in the future related to clinical trials, have you ever participated in a clinical trial as a patient? Lilly Stairs (09:29): I participated in a study that was through my gastroenterologist for my Crohn's disease. And it happened right when I was in the office and it was quick as could be. My gastro said, "Hey, I'm working on this study. We're trying to measure the levels in the liver because the liver is often impacted by treatments." And so I agreed to do it. And it happened all in the same office visit. It was the most convenient clinical trial experience I've ever had. Did the informed consent, all there. Probably happened in 20 minutes Janet Kennedy (10:08): Now from a standpoint of your work as a patient advocate and being around the clinical trial space and helping support companies and organizations that are involved in clinical trials. I want you to put your hat on as a patient advocate. If you were to point out one or two things that are really kind of a roadblock for patients in participating successfully in a clinical trial, regardless of whether the clinical trial is a success, what do you think are the challenges that patients face that the pharma companies, CROs and physicians that are involved in research need to be thinking more about? Lilly Stairs (10:48): I'm just going to pick two - there's a lot. And so two is tough for me to do, but I will do it. I still think that awareness and myth-busting. As much as we talk about it in our community, I think that in the professionals and the clinical trial space, we talk a lot about this, but we aren't reaching the right people. It's still a huge issue. There's still so much misunderstanding about clinical trials and risk associated with them. And am I going to get the placebo? So many questions that really plague the everyday patient when we think about clinical trials. And so I think we have a lot more work to do there. And part of the solution to me is that we need to have more people working together to raise awareness and to get into communities. And so we can't be all working in silos because we continue to work in silos. Lilly Stairs (11:45): We need to work together. That's one piece. The other big barrier that I have seen is honestly, the travel and the distance piece. There are a lot of patients who actually do want to participate in clinical trials, but they are restricted because it is too far for them to travel. And they can't either, you know, financially afford it because the trial is not going to cover the cost of travel, or it's just, it's a distance thing. And they are not well enough to travel. And I can point to through my work with all of the different companies I've worked with, I can point to so many patients from across therapeutic areas that have had this experience. Lilly Stairs (12:28): So I was recently speaking with a woman who was in a breast cancer trial. First of all, her physician didn't even bring up clinical trials to her, which is a problem in and of itself. She did the research on her own and she ended up traveling from the East coast to the West coast for a clinical trial. And she had to do a GoFundMe so that she could raise the money. And she ended up having to drop out of the trial because the GoFundMe only got her so far. So we have patients who are willing to participate in trials, but we're not making it convenient for them. I would say that we need to branch out outside of some of these research hospitals. We also need to, if we can't do that, build money into the budget to help the patients get there in a comfortable manner. Janet Kennedy (13:14): So is the challenge that a lot of the research hospitals are in major metro areas, and if you don't live in New York or Boston or Atlanta or Los Angeles, you're going to miss out on an opportunity. Lilly Stairs (13:26): Yes. Precisely. Janet Kennedy (13:29): All right. Well, what would solve some of those problems? Lilly Stairs (13:33): Again, travel, being able to provide stipends for travel and not just like a $25 Uber, if somebody lives out of state, but they're really willing to participate in the trial. What can you do to facilitate accommodations, to cover the flight, to cover the hotel room? Because I'll tell you something working in the recruitment space, you're going to spend a lot more money trying to recruit patients that are nearby. Versus if you just foot the bill for flying someone out, getting them a hotel room who's eager and willing to participate. So that's one piece. And then also, I think we need to be raising more awareness within some of these community hospitals too so that physicians within community hospitals can refer out to some of the major research institutions. Because again, this is where the awareness piece comes in. There's a lack of awareness and understanding about trials. So patients don't even know they exist in the first place. Janet Kennedy (14:31): So raising awareness is a real key. Now, how are patients finding out about things? They suddenly find out they have a disease and they're just going online and doing a search and then whatever pops up pops up. Lilly Stairs (14:44): I think that online is of course a huge space. I mean, I would guess I, I won't put a statistic because I'm sure I won't be accurate, but everyone's going to Google. Everyone goes to Doctor Google. And I think that the patient advocacy organizations play a role. But I will say that we are seeing patient influencers or individual advocates are becoming more and more prominent in being the trusted go-to resource for sort of your everyday patient. So these are the patients who are sharing their stories on Instagram and TicTok now and Twitter, and they have blogs. They're on YouTube. That's where patients are going because they're able to get that sort of one-to-one support and really hear from somebody who understands them. So I've been trying to really push companies, pharmaceutical companies, biotech companies, CROs, to engage not only with the patient advocacy organizations but also with some of these patient influencers and advocates who are out there and working to fight the good fight and raise awareness. Janet Kennedy (15:49): You know, a few years ago, patient advocates were not that seen, were not that present. And I think as social media has become really an essential part of our lives, patients are realizing that there's real power there. However, there's also the challenge of my gosh, you have a chronic illness, or you have a disease that is very debilitating and social media in many ways, demands that you're up, that you are being positive, that you're being optimistic. How would you balance being someone with a chronic illness or a disease that really makes you feel bad? And these social platforms that sort of demand a much more upbeat presentation of yourself. Lilly Stairs (16:34): That's a great question. And I think it's something that's so many advocates struggle with because when you become a patient advocate and you make the decision to share your story, you're often the type of person who wants to do better and to help others, right? You're out there because you want to support other people and help them not feel like they're alone. And that can become emotionally demanding and physically demanding. Even when, especially when you are going through it in the auto-immune space, what we would call it a flare. So when you are really not well and your disease is under control. And so it's a matter of learning to say no, and to set boundaries. And so I've seen a lot of patients artfully do this, where they say, you know what, I'm turning off the comments on my Instagram because I cannot be every single person's support system. I can put this out into the world and I can try to help them, but I can't possibly respond to every single person because it's too taxing on me. And you know, some maybe sometimes you have your comments on maybe sometimes you have it off, but it's little changes and tweaks like that to help ensure that you're taking care of yourself while you're taking care of others. Janet Kennedy (17:41): I know you mentioned earlier that you're actually doing a course for patient advocates on how to use social media. There are so many platforms now, how are you focusing their energy? When I coach about social media, my advice is you can't do it all. So pick a few and do it well. But I do see some patient advocates with a lot of social platforms going on at the same time. Lilly Stairs (18:06): Oh yeah. It's hard to do. I agree with you, Janet, that picking one or two and focusing on those and making them really great is also my piece of advice. It also feels less overwhelming. I was just giving a keynote at the One Rare young adult's virtual summit. It was their first annual one. Rarer is an amazing organization run by Jen McNary. And so I highly recommend checking them out. It's a rare disease organization for young adults, but we were talking about career planning and how you build your brand as an advocate. And again, one of my key pieces of advice was to pick one platform so that you don't get overwhelmed. And so that you are not emotionally and physically drained and also pick some platforms to have that are private, that is just for you and your friends. I'm really active on Twitter professionally, but I have my Instagram private and closed so that I can just feel comfortable sharing what I want to share there and not feel like I always have to be on. Janet Kennedy (19:05): It is a huge challenge in social media and one that demands the ongoing feeding of the beast. However, do you think you can take a break from social and come back and not lose your audience? Lilly Stairs (19:18): Oh, 100%. Absolutely. If you need to take a hiatus, you can. And I think that what's interesting is that especially in the patient community, people are very forgiving of that because they know exactly what you're going through. And so they understand that it can be really taxing to have to be on all the time and they'll miss you while you're gone, but they'll be just thrilled that you've come back, Janet Kennedy (19:41): Circling back to Patient Authentic and what you had originally intended to be before COVID came. Where did you think that the company was going to take you and what were you hoping to accomplish? Lilly Stairs (19:54): Honestly, what I wanted to do, is still there. And that is to build and work on meaningful projects that support the patient community and make you move the needle in healthcare. And so I am doing that. It's just a bit of a different one than I thought. Because of my background in marketing, I always envisioned that every single thing I worked on was going to be super campaign driven. And now I find that I'm doing a little bit of strategy here, a little bit of project management, a little bit of advocacy engagement. So if anything, it's really more fitting for me because I tend to be the type of person who loves to work on a lot of different things at once. It's very rewarding for me to be able to leverage a lot of my different skills to help better the community. The opportunity to work, not only health tech and biotech and pharma, but also to work with some of these patient advocacy organizations who are really at the ground level fighting the good fight. Janet Kennedy (20:59): Oh, well, that's a great note to end on. So Lilly, tell people how they can find you. Lilly Stairs (21:04): Yes. So you can find a, learn more about Patient Authentic at www.patientauthentic.com. You can find me on Twitter @LillyStairs. You can find Patient Authentic on Instagram @PatientAuthentic. Janet Kennedy (21:24): That's excellent. Well, I can't thank you enough for being here, Lilly and I look forward to hearing more about some of the new programs and projects you're going to be involved in, in 2021. Lilly Stairs (21:35): Thanks for having me, Janet. Janet Kennedy (21:38): Thank you for listening to our interview with Lilly Stairs, founder of Patient Authentic on the "People Always, Patients Sometimes" podcast. We look forward to hearing your thoughts about the episode. You can tweet us @spencerhealth or send me an email at jkennedy@spencerhealthsolutions.com.

Today on Health in 2 Point 00, Jess might be a little wary of my colonoscopy story, but it reveals just how well insurance companies communicate. In this episode, Jess and Matthew cover GoodRx filing an S1 to go public, Trellus Health raising $5 million in seed funding for its platform for inflammatory bowel disease (IBD) and other chronic conditions, Clara Health raising $15 million for patient engagement, and Castor raising $12 million for its clinical trial platform.

Launching a successful startup is hard. It’s even harder when there’s a global pandemic affecting every aspect of the market. Market shakeups aren’t new, but when you’re new to the market, your ideas could be the shakeup that’s needed! Fresh eyes, fresh ideas, fresh approaches can be a breath of fresh air in a stalled market. And Evan Ehrenberg and his company threw open the window with their millennial mindsets. In this episode, come hear how Evan and his team at Clara Health used a unique mix of traditional and unorthodox approaches to building a successful startup out of a college project. Evan’s candor, transparency, and vulnerability, quickly pull our listeners in as he recounts the struggles and triumphs, and unique approaches, millennial companies face during COVID-19.   Here are the show highlights: The path from idea, to a minimum viable product, to scalable product (3:58) What success can look for a startup (8:34) What it’s like to be a millennial innovator (11:22) How transparency and vulnerability in conversations can spark ideas (17:36) Combatting discrimination and ageism in the company and when pitching (18:54) Steps to take that can help battle burnout and increase productivity (24:48) Using conversations to help build stronger trust and credibility (31:48) Guest Bio Evan Ehrenberg is Co-founder and CEO of Clara Health, a company that exists to help patients obtain better access to breakthrough clinical trials. Before founding Clara Health, Evan managed AI research at MIT, Pal, and Palantir. He is a USERN (Universal Scientific Education and Research Network) Ambassador and a recipient of the Forbes 30 under 30 award. Having received his Bachelor’s in Cognitive Science from UC Berkeley at the age of 16, Evan went on to become the youngest Ph.D. candidate at MIT. If you’d like to reach out to Evan, or simply want more information about Clara Health, you can follow him on Twitter at @EvanEhrenberg or @ClaraHealth, on LinkedIn at Evan Ehrenberg or reach out on their website at ClaraHealth.com.

Raj Kapoor contracted Covid in mid-March.  He and his family are recovered and well. But Raj is taking aim at shortening the path to a post-Covid world.  He partnered with Clara Health to create www.worldwithoutcovid.org.  The site let’s people register to help researchers worldwide accelerate their race to find better testing, treatments, and vaccines. Raj has been a venture capitalist (Mayfield) and a entrepreneur (SnapFish).  He is currently the Chief Strategy Officer at Lyft.  In this episode we discuss Raj’s journey from contracting to recovering from Covid.  We also discuss the path to finding a treatment, and the why’s and how’s of California’s lockdown.  We also discuss (Caifornia Governor) Gavin Newsom’s “6 Criteria for lifting quarantine”, and the current state of the US Presidential race. We turn to Lyft, and the future of transportation (the original topic of this episode):   How Lyft is faring during the Covid crisis, how will change cities, and how Lyft affect climate change. Finally, we briefly discuss the effect Covid might ultimately have on the music industry. World Without Covid:  www.worldwithoutcovid.org Clara Health:  www.clarahealth.com Lyft:  www.lyft.com Something Ventured:  www.somethingventured.us  

Making patient engagement more streamlined and across the board https://outcomesrocket.health/clarahealth/2019/09/

Have you heard the term Patient Advocate? How about the expression "not about me without me" in the patient space? So often over the past decades, if not hundreds and thousands of years, the patients have sometimes the least consideration when healthcare decisions have been made. Well, that's changing due to empowered patients who are using social media, online resources and the ability to connect with other people of like situations. Patients now are finding that they not only have a voice, but that voice is starting to be respected and drawn into the healthcare community. Today on Get Social Health I'm very proud to be speaking to Lilly Stairs. She is a leading voice in the rapidly growing patient engagement field. This will be the first of a number of podcasts that I'll be covering where we'll be talking with patients or about patients and their engagement in healthcare. So join me for a discussion with Lilly Stairs on Get Social Health. Connect with Lilly: LinkedIn Twitter Follow the conversation or drop in at the timestamps below: Janet: 00:00 Announcer: 01:07 Welcome to Get Social Health, a conversation about social media and how it's being used to help hospitals, social practices, healthcare practitioners and patients connect and engage via social media. Get Social Health brings you conversations with professionals actively working in the field and provides real-life examples of healthcare, social media in action. Here is your host, Janet Kennedy. New Speaker: 01:33 Hey everybody, this is Janet Kennedy. Welcome to Get Social Health. On today's podcast, I am thrilled to be finally talking with Lilly Stairs. She is head of growth and partnerships at the Savvy Cooperative. We're going to hear a lot more about that in just a little bit, but first I want to set the stage. Lilly and I have known each other through social media for quite a while and one of the things that she brings to the table is the importance of including patients in the discussion online and in the work of healthcare. So whether it's the work she's doing as a speaker or the company that she's with, she really has a fascinating perspective on getting patients involved. And why is she such a strong patient advocate? Because she has battled a couple of very serious chronic health issues and I think you're going to find that really interesting to hear about. So without any further ado, welcome to the podcast. Lilly. Lilly: 02:31 Thank you for that lovely introduction, Janet. Janet: 02:35 You know, it's tough when you're really representing well, every part of healthcare. Which hat you put on must be kind of confusing. Lilly: 02:42 It is. You know, I always, I do joke all the time about how I wear so many different hats and now I have to take them on and off and sometimes they wear them all at once. They've even done a post on Instagram ones where I put a bunch of different emojis on my head representing all the different hats that I wear. Janet: 02:59 No, that actually makes perfect sense. I appreciate that you're with a company called Savvy Cooperative, and I think it's a fascinating concept. I love the idea of how it came about and I want to hear more about that. But first, why don't we set the stage? Can you tell us all a little bit more about your personal health journey and really how you got to the place you are today in some ways, patient number one, and how you were able to translate that into a life worth living and a career. Lilly: Oh my goodness. So I never thought that I would end up in health care, to be honest with you. I didn't even know what the term biotech meant. And here I am working hand in hand with the industry, but when I was 19 I actually started having this pain in my left knee and we weren't really sure what it was. Lilly: 03:51 I had just wrapped up my freshman year of college at Northeastern University in Boston. I absolutely loved it, couldn't wait to get back. I was home for the summer with my family and we went on vacation and I started to wake up every day and my body was achy and I was like, ah, you know, maybe it's the beds. But then I thought, Huh, well I'm in college. I could really sleep anywhere and I, I'd be fine. I ended up getting home from vacation and all of a sudden I woke up one morning and I couldn't move. I was paralyzed with pain literally throughout my entire body, unlike anything I had ever felt before. And My mother ended up having to dress me and feed me because that pain was so severe. And so I started going in and out of doctor's appointments. They were not sure what was going on. They thought potentially it could be Lyme disease or Parvovirus. Finally, we had a doctor who said, and then they told my parents at the time, first that we think Lilly has psoriatic arthritis. And I remember my parents communicated this information to me and I just stood there, speechless, devastated, heartbroken. You know you hear arthritis and you think of your grandmother who just gets arthritis in her hip or her knee. You don't think that as a young, vibrant, 19-year-old woman that you're going to receive such a life-changing diagnosis. And so I decided against the doctor's wishes at that point to go back to school. And I was waking up every morning having to take a hot shower to warm up my joints. Hours before class. I tried to find seats on public transportation and when I was sitting down, but an elderly person got on the train, people would look at me like, why isn't this young millennial getting up for this elderly woman? But little do they know that I'm probably in more pain than that, that elderly woman and so on and so forth. Lilly: 05:42 And six months after I received that psoriatic arthritis diagnosis, I ended up in the hospital. I was in and out of the ER three times in one weekend with excruciating stomach pain. The doctors didn't believe me. They thought I was faking it, which is, unfortunately, something that happens often in our healthcare system to women. And after I was admitted, they ran a number of different tests. Over the course of a week, I lost 30 pounds, was on 90 milligrams of morphine, and the doctor said, listen, we've got one more test that we can try and if this doesn't show anything we don't know what's going on. And so I, I took this pill that actually took pictures as it moved through my body every three seconds. And it was at that point that they discovered I had bleeding ulcers in my small intestine and they diagnosed me with Crohn's disease. Lilly: 06:31 And so within the course of six months, I had received two life-changing diagnoses that I would live with forever. I remember pulling up my computer and while I was sitting in the hospital bed and I started typing in Crohn's disease and psoriatic arthritis and what comes up, but the term autoimmune diseases, turns out there are 50 million Americans who are living with autoimmune diseases for point of reference. That's about twice as many as people with cancer. I just remember her being so angry because I had never heard the term autoimmune disease before, but here I was living with two of them and there are 50 million Americans who are in during this unbearable pain and suffering that I've been through and I was just so angry and knew I had to make a change. So I like to say that my truest self was really unearthed in the hospital bed and it was at that point that I decided I'm going to do something about this. Lilly: 07:22 I'm going to raise awareness for people battling autoimmune diseases. I'm going to help find new treatments. And so I ended up going through over the next couple of years, went through a number of different treatments because it's as an autoimmune disease patient, it's really hard to find one that works. I am very fortunate to say that I've been in medically controlled remission for five years now thanks to the amazing work of the biotech and pharmaceutical just strain. And that led me into my transition into healthcare. I basically was diagnosed at 19 so that was around when I was starting to do ops at an internship and jumped right into healthcare, started working at mass bio, the Trade Association for Biotech and Pharma companies and learned about patient advocacy as a career track when I joined them. And from that moment on, knew that I had to, had to be in patient advocacy. And so that was my transition into the space. Janet: 08:14 What a fascinating story. Now, these two issues are not related, right? It was just horrible luck that they both happened to you. Lilly: 08:23 So they actually are related. They're both considered autoimmune diseases and it's, I, I have a friend who says autoimmune diseases are like chips. You can't have just one. And that is the case for many. It's that you'll feel, and there's over a hundred different autoimmune diseases. So lupus, MS, Psoriasis, those are all considered autoimmune diseases and many people who get one often end up getting a second or a third as well. Janet: 08:49 Oh, well there's something I've learned today. So you've already done your job for the day. Excellent. Lilly: 08:56 Raising awareness. That's my big goal in life. Janet: 08:59 When you serve as a patient advocate for a company, what does that really mean? Lilly: 09:03 Yeah, it's an interesting question. It means something different depending on the company. I think there's an important distinction because there are some companies who truly embody this patient-centric mindset and I really hate the word patient-centric and I think a lot of people do in the industry but its sort of what we're stuck with. If you don't say your patient-centric then people think you're a bad company. It means that you are the person within the company who is championing the patient voice. You are working across teams to ensure that the patient voice is being infused into the work that you're doing and you are fighting at the table. You ideally at a company, you're in a leadership position as a patient advocacy person and you are fighting to ensure that business decisions that are made are what's in the best interest of patients. And so that's really the primary role of somebody who sits in a patient advocacy position. But there are also doing a number of other things. They're managing relationships with the patient advocacy organizations and patient communities and they are helping develop disease education awareness materials to educate on the different medication medicines that they might be developing or supporting, helping offer grants to different advocacy organizations. So there's a lot of different ways that a patient advocacy function within the industry. Janet: 10:31 So when you were working with Clara Health, you are working with a company that was trying to match up Pharma and clinical trial participants, is that right? Lilly: 10:41 Yes. It was a multi-sided marketplace there. We were working to, or we are working because I am still a lead patient advisor with them and love the work that Claire is doing, but we're working to connect patients directly with clinical trials and making it easy for patients to connect, which means we're helping them search for the clinical trials. We hold their hand through the process, we call the clinical trial sites on their behalf. We coordinate their travel handle, all of those administrative burdens that a patient would typically be tasked with. And then on the other side, we work with companies to help them recruit for their clinical trials and retain patients. It's in their clinical trials and we take a very patient-centric approach through that because we actually work with patient advocates to help companies think about what their clinical trial protocol looks like and actually help support like have live patients to help support other patients through the process. Janet: 11:38 All right, and then tell me about making the transition over to Savvy Cooperative. How did that come about? Lilly: 11:44 It was an incredible opportunity. I've admired Jen and Ronnie who are the co-founders for quite a while now. Jen and Ronnie are notable patient advocates in the space. Ronnie is a cystic fibrosis advocate who developed the largest online community for cystic fibrosis patients and Jen is a juvenile idiopathic arthritis patient. And she has spent her life really dedicated to patient advocacy. She works with the FDA. She got her Ph.D. in human factors research so that she could really bring her perspective and to industry. What they've created is something so special that I am really honored to be a part of because it is a patient-owned cooperative. As these advocates, they were constantly being asked by companies to give their perspective, but what they realized was that yes, we love giving our perspective and it's great that they're asking us, but you know what? We can't offer a diverse perspective. There should be more patients who are giving their perspective and just because there may be not public about their disease on social media, they're a little harder to find, but that doesn't mean that companies shouldn't be actively trying to reach out and get those diverse perspectives. And so that's why Jen and Ronnie founded Savvy Cooperative, and they made the decision to make it a cooperative model, which means that patients actually own shares in the company and share in our profits at the end of the year because they believe that the business model should benefit the patient and patient should be fairly and equitably compensated for the work that they do. And so I couldn't have imagined more of a perfect fit for me as somebody who, you know, my priority is to ensure that we are infusing the patient voice across every aspect of the industry, from Pharma to startups to health insurance. We want to make sure that that patient voice is incorporated early and often. And that's ultimately Savvy's goal. So I, I'm living the dream, getting to work with all of these different companies and, and learning about all of them, all of the incredible work that these companies are innovating on and being able to bring patient experts into to give feedback on that and so that they can iterate and make a product that truly fits an unmet need. Janet: 14:06 Oh man, that's fascinating. And sometimes I think a lot of people don't realize or I don't know, maybe we should realize that patients traditionally really don't have a lot of money. And yet these companies, Pharma companies, in particular, they're going to be making millions and billions of dollars through selling all the way through to the patient. Yes, via a provider, a physician, a nurse practitioner. But ultimately it's coming out of the patient's pocket in some way. And yet they've had very little economic say and how these businesses and medications have been developed. Lilly: 14:40 Absolutely. And I mean, and it's, it's crazy to me because in every other industry we consult the end user. If you look at consumer-facing products, they're constantly running focus groups. And I actually wrote a piece on this called challenging healthcare to engage in a Pepsi Challenge. The idea for this story came from a book I was reading called Blink by Malcolm Gladwell. And in it, there's this whole section on Pepsi and Coca Cola. And he talks about how they were really had to have, I mean they still go head to head, but how they were trying to figure out what they could do to get consumers to buy more of their product. And so coke even went to such lengths that they ended up altering their secret formula based on feedback from consumers. They have this really secret formula that they are used for years and they altered it to try to sell our product. Lilly: 15:40 And as I was reading it, and this was right around when I started at Savvy, just thought, oh my God, if we could get health care to engage patients. For the way that consumer-facing industries engage patient, engage their customers. We would be golden. I mean health care would actually be innovating in making things that matter to patients because right now part of the problem is so much money is being wasted on products that patients don't want or that aren't the right fit or that don't even end up being successful. And so not only is it really d quote unquote right thing to do when you engage patients, it's actually a really smart business decision that helps save money and earn more money because your end user is happy. They want the product. Janet: 16:38 You know, I've been involved in the startup community for a while and a lot of Startup Weekends are about young people coming in with an idea and I'll give them credit. They're thinking through challenges that people unlike themselves or having predominantly their grandparents, for instance, their Nana or their grandfather, and they've got this really cool idea that they may be figured out at Thanksgiving, I could solve this problem. The problem is I wonder if they've actually researched it and talked with not just their grandparent, other people in the industry. So how exciting it is that they seem to be getting startup funds and get support for an idea that really hasn't drawn in the patient's perspective and that generationally it hasn't really been vetted out by a true need. Lilly: 17:25 Yeah. And you bring up such a great point because the young tech entrepreneurs are, while they mean well and I think that some of them are doing it right. Okay. They are doing their research to actually really yeah, boots on the ground and talk to the patients who this matters too. And I had the opportunity now to work with a number of different companies who have made the decision to talk to patients and are actively working with them and it makes a major difference in the development of the products in a way that it's iterated on. I mean, I have to give the hats off and a shout out to Clara Health for bringing me on as their patient advocate as one of the first hires. That's really unheard of at most small health tech companies and but, but that made a big difference because I was able to come in and share my perspective and then say, Hey, you know what? Lilly: 18:20 I'm going to give you this perspective, but we need to bring in a lot more other patient perspectives. If we want to actually develop a product that's going to meet a diverse set of needs because one patient, much like in a consumer-facing industry, you can't talk to one person and build an entire product off of that. That's crazy. People would not do that. It would not be allowed. And in the consumer-facing industry, you would not get to move forward with that product. It just wouldn't be an option. How tap? Because it has not been and in healthcare in general, because it has not been the status quo to talk to the patients. Nobody's doing it and you're not expected to. And VC firms aren't forcing these companies to talk to patients because again, it's just not what's expected. And I think that it's resulting in a lot of products that are not making it to market or are startups that are failing. Janet: 19:12 And you know, there's a limited supply of cash out there and every time we see something fail, that limits the pool of cash for other maybe more on focus ideas that have maybe a little bit deeper research or a better validation. I love that everybody's trying to solve problems and I'm sure that that was a good thing they were trying to do, but really how many diabetes apps do we really need? I think it would be very cool, you know if we could figure out how to get the patients involved in doing this kind of development. Lilly: 19:43 Yeah, I mean certainly. And so really our plea at Savvy is that you get out there and, and you talk to patients and we've also made a real effort to be startup friendly. I think another big part of the problem here is that it can often feel cost restrictive to some of these small startups to be able to say, hey, we need to allocate the money to go talk to patients. And so what we've done is we've created a pricing model that does accommodate some of these smaller startups that they still have the ability to talk to patients but not break the bank because we understand that every dollar really counts when you're at that stage. And so I really encourage companies, help small tech companies to spend the money. It will be worth it. I know every dollar counts, but it's so critical that you spend that money there. Speaker 1: 20:32 You know, one of the things you mentioned is that diversity in your community is really important, but when I think about the number of conditions and disease states out there, holy cow, your community could end up being millions and millions of patients. Lilly: 20:48 Absolutely, and what's interesting about our co-op model is that we already have a very large reach. So because our patients are owners, many of them are owners and our platform rights, they own a share and again, they share in our profits at the end of the year. This means that let you know if we're recruiting for a company that really wants to talk to a thousand patients, a thousand patients in Crohn's disease, let's take Crohn's disease because that's what I have and it's an easy one to go to. And let's say we have 500 Crohn's disease patients on our platform. We could reach out to those 500 patients and they'd all find us enough to get us to that 1000 and sent the company and they would all do that because they're all highly motivated in Savvy success because when we are successful, they're successful. And so it's a really, really unique model unlike anything else that exists. And so we're able, we have this really special reach into private Facebook communities and support groups and boots on the ground because our members are, are the conduit. There are salespeople of Savvy, of spreading the good word about patient feedback and bringing their fellow patients into the fold. Janet: 22:05 Okay. So what I'm imagining is that there are a lot of groups that patients may be involved with, ones that are, say specifically about their disease state or condition where they're talking to patients. So that's not really what you're trying to do out there, but they can on your behalf, recruit more people with like conditions into your projects. Lilly: 22:28 Exactly. And that's how we get a more diverse range of folks on our platform as well. Because not every patient works with an advocacy group or shares their story on Twitter or regularly it goes out to companies. So that's sort of the low hanging fruit if you will, or the patients who are easily accessible. But there are a lot of patients who, you know, maybe live in the middle of the country and the way that they're expressing their patient journey or they're learning more about being a patient is through a local support group. And so we're able to reach those patients because we have folks on our platform who are connected everywhere, which is really, really special. And just unlike anything I've ever seen working in this industry. Janet: 23:18 You know, and that's a really big issue for hospital systems. I know for instance, in the state of North Carolina, we've had some rural hospitals close, well those patients still live in the rural parts of North Carolina where those hospitals formerly were, and they're losing all kinds of resources, not the least of which is the ability to connect to other like-minded patients. So as we look at critical clinical trials, mostly taking place in major cities or even midsize cities, there are a lot of patients that are falling through the cracks, are not getting to participate because of this limited geographic viewpoint. Lilly: 23:55 Right. On the money. I don't even have anything to add to that because that's exactly what we're always talking about. Janet: 24:02 Excellent. And I'm glad we're on the same page. So tell me about the kinds of things that as patients they can get involved with. And I'm assuming that of course, this is all going to be Phi protected health information, or are they participating in anonymously? Are there times when they would actually block their identities from being known? Lilly: 24:22 Yeah. So it all depends on the gig. So when we call them gigs, because what we like to say is we've created a gig economy for patients. So patients can log onto our platform and they can see different opportunities that are open to them and they can raise their hand if they feel there are fit. So some of them involve maybe an anonymous survey where you provide your feedback online via a survey. Some could be sharing your story via a blog post with a company, um, in which case you would be talking more publicly about your story. There are gates that allow you to stay in anonymous, but there are also games that allow you to get out there and share your story. And, and I think we certainly have a mix of patients on our platforms, some who really want to be out there and some who still want to contribute but want to do so in an anonymous way. So there are options really for everyone. Janet: 25:09 Oh, well that's excellent. And I think you're gonna find that you probably have already found that there are patients who are just tired of being in the dark and they're learning to embrace, you know, where they're coming from. And of course, we get to the question of stigma and while they might be ready in their own groups to come out and talk to other health professionals that don't necessarily always translate to their own neighborhoods or even inside their own home, you know, talking about their conditions with friends and family. Lilly: 25:38 Certainly. Yeah. And, and that's something that we're very sensitive to because we know that unfortunately there is still a stigma for patients within their kind of everyday communities and in the workplace. And some people would like to keep that private. But it is my hope that we can continue pushing to raise awareness, especially about some of these invisible illnesses where people, you know, in your workplace, they may not fully understand and you might not feel comfortable sharing with them that you living with an invisible illness. But I want it to become more commonplace, that that's what people are doing so that we can raise more awareness and people can understand that, you know, if you're living with an autoimmune disease, when you'd say you're tired, you can't come into work because you're tired. That's not a normal tire that's on a tired, that healthy person feels, that is crippling fatigue that forces you to be in bed all day. You just, you barely even feel like you can take a shower because you're so tired. And so I think that we need to actually keep pushing. And I do encourage people when they comfortable to share their stories, wherever they can with their workplace, with their family, with their friends, and with their communities to help raise that level of awareness that we can have better support services in place where people living with invisible illnesses or autoimmune diseases. Janet: 27:03 Oh, that's excellent. Probably have already found that there are patients who are just tired of being in the dark and they're learning to embrace, you know, where they're coming from. And of course they, we get to the question of stigma. And while they might be ready in their own groups to come out and talk to other health professionals that doesn't necessarily always translate to their own neighborhoods or even inside their own home. You know, talking about their conditions with friends and family. Lilly: 27:30 Certainly in it is, and you know, we'll get there. It's taken time. But if you look at cancer, cancer, something, something like the American Cancer Society, that advocacy group has been around for, I think it's over a hundred years and anybody says, you know, so and so, and my family was diagnosed with cancer. There's really this automatic empathy that strikes I think between a peep. People get it, they understand how difficult that is and if you were to communicate that at the workplace, it would be understood, oh, this so and so needs to take time off because they have to care for their family member who has cancer. We lack that same sense of empathy when we're talking about invisible illnesses, autoimmune diseases, mental health issues are another big one. And I believe the only way that we can really push forward in that is by people coming out and sharing their experiences and telling their story. Lilly: 28:29 Whether it be at companies or just at your, in your local community center is at Church, at a place of worship at the local YMCAs. It needs to be happening everywhere. It really is a grassroots movement. It's amazing what all of these patient influencers have done and the movements and changes they are helping make in shifts in mindset. But a lot of work can be done on a grassroots level as well. And so it's my hope that you know, we can continue to inspire patients to, to get out and feel comfortable to share their experiences and their stories. Janet: 29:02 Now you just got back from a conference that was very patient-focused, didn't you? Lilly: 29:07 Yes, I was at a Patients as Partners in Philadelphia and it was my first time there. I spoke with a number of folks who said, oh my gosh, you're going to love this conference. It's one of my favorites. And what's really special about it is that on almost every panel they have patient representatives who speak on behalf of patients and advocates alongside industry professionals. And that's really unique because typically at a conference you'll see a handful of panels, maybe sometimes no panels that include the patient voice. And so this is really unique in that the patient really is present throughout the entire conference. I think it makes a massive difference in the strength of the content, the value of the contents. And I only wish that we could scale it up to see this happening at more conferences, not just patient-focused ones, but really across the board and in every nook and cranny of industry. Janet: 30:09 I really challenge every single health conference, not just to make a place for patients to actively engage, but to fund their presence through scholarships because let's face it, so many patients are facing huge financial burdens. Therefore, it isn't just a question of time and even money and the hotel, it's like money for food or for care for their families at home while they're away at a conference. I'd love to see more of this happening. Lilly: 30:39 Yeah, Janet, you couldn't be more right. And, and that is something that patients face. It's like, okay, now we have a seat at the table, but what about the fact that we have to take off work to go to this conference? You know, maybe not all of us work in the industry and, and so for us to have to leave work and take time off, and find childcare, daycare and who's going to go check on elderly parents? There's just so many factors that we need to think about. And then this kind of goes back to the clinical trials as well. This idea that we need to be designing experiences around the patient's life. We can't expect patients to just plug into what we want them to plug into. That's not fair. That's not right. So I do, I challenge people to really think about how we can design around the patient instead of, you know, trying to get them to just plug into what we've already developed. Janet: 31:37 You know, you mentioned to me earlier about the administrative burden that gets put onto a patient file or in a specialty Pharma situation. Can you describe that a little bit more? Lilly: 31:47 I'll talk about it a little bit from a, from a personal point of view and something that I've been experiencing over the past couple of months and really have been quite infuriated with the burden that I has been placed on me when it comes to dealing with insurance and some of the specialty medications that I need to be on. And I'll preface this by saying I'm in medically controlled permission. So I function remarkably day to day, kind of like an average person, which is again, remarkable and, and all the credit in the world to this industry that has developed these, these life-changing medications. But there are a lot of patients who are dealing with administrative burdens on top of being incredibly sick and being so sick that, you know, as I was talking about that they can barely take shower without feeling exhausted. So keep that in mind. Lilly: 32:42 Is that, as I kind of talked through all this frustration, there are a lot of people who are dealing it with, with it while they're actively sick. And I just can't imagine that. So lack of specialty medication is something I need every two months and it costs $20,000 every two months. So it's a hefty price tag. I am very fortunate that I'd have an insurance that covers it. But for years now I have had major issues with ordering and delivering this specialty drug. I spend all of this time coordinating hours with my physician who needs to write the prior authorization, which goes to the specialty pharmacy and my insurance. And then it gets, you know, most recently I was told, oh it's, it's approved, it's approved. Okay, excellent. It's approved. Great. I get a letter in the mail saying it's approved. I called to schedule the delivery. Oh No, it's not approved. I'm not sure why. I said, well, I have a handwritten letter from, from you that says this, this medication has been approved. So, oh no, I don't know what's happened with our system. That's, that's not the case. So then it's up, got to go back to my physician who my physician then has to call the specialty pharmacy and then I call the specialty pharmacy again to check in and you get the picture. I mean this is this, it's a constant frustration and this is one time and so finally we get it all set up. The delivery is supposed to happen. We get to the day, I stay in my apartment all day. I do not leave my apartment, I do not take a shower. I did not do anything because I don't want to miss the ups truck that delivers my medication. Lilly: 34:21 And so it's 3:00 PM and I receive a notification on my phone that the medication has been delivered. And I say, well that's interesting because I'm supposed to sign for the medication and I had no bell ring. And then I pop outside. I'm like, Oh, they left this $20,000 medication outside. Somebody is in trouble, but the medication isn't even there. So now I'm left, you know, in a frenzy trying to call ups to try to figure out what's going on. I am. Nobody's being helpful. I kept, I keep getting kicked out to an international helpline. And so I go to Twitter and I started tweeting about it and I, the patient community totally rallied around me and it ends up that I get the phone number, the direct line to the San Francisco office. Then you need to speak to again on the phone with them. Lilly: 35:08 They tell me that it was delivered to the restaurant next door. Oh my gosh. So my $20,000 medication is sitting in a restaurant next door that I was supposed to sign for. So I first opened my door, run downstairs to the restaurant and they have it miraculously and they put it in refrigeration because it says perishable on it, but at, so I get the medication. But it was only because the only reason I got my medication that day was because I am on Twitter actively and how to following within the patient community. If I was kind of, you know, an everyday person who didn't really, you know, have the wherewithal to like navigate all this and put it on Twitter. And I mean, I don't think I would have had my medication. And that is upsetting to me because Twitter shouldn't be a privilege to get your medication. Lilly: 36:03 And so that's just one example. I've got a million more examples of, of instances like this that happened. And I know that this is, this is the struggle of countless patients who are on some of these specialty medications that they deal with. And so there is a massive administrative burden being placed on the patient to be coordinating appointments, to be coordinating medication, to be calling insurance and fighting insurance bills. And I, I mean, I feel like I spent half my life on the phone fighting with insurance about charges. So this is just the reality that patients are living with. And I, and, and I don't think this administrative burden is fair and I think there's a lot of work that needs to be done in that space and I'm eager to see more people come into disrupted. I'm, I'm encouraged by some of the insurance companies that I've seen coming into the space like Oscar health. They're a startup insurance company and I'm actually a member of theirs right now and I've been really impressed by air communicative nature and how easy they make everything and the on-boarding and so I'm really thrilled to see some innovation happening in this space and I hope we can continue to move the needle because it's a big issue. Janet: 37:18 You've raised so many good ideas here for startups and to inform them about issues being faced by patients, but I do want to clarify one thing. The Savvy Cooperative is not a place for patients to come and share stories with each other. Right? It's not a support forum. It's about getting the patients from a business perspective, engaged with the health care companies, the Pharma companies, people who need to better understand what the patients are going through. They need to reach those folks, which sometimes is very difficult to do. Is that right? Lilly: 37:50 Yeah, that's a great point. And I'm glad you brought that up. And, and the reason that Savvy isn't necessarily a place where patients can talk and share their stories is that there are already so many people out there who are doing that. A lot of advocacy organizations have offered that platform and we see a number of different people who have taken the initiative on that. But we really haven't seen people coming in and, and giving patients an opportunity to monetize and to really actively get connected to companies and, and transform the space. And so I, that being said, I think that Savvy really is a wonderful community of patients and a community has sort grown organically if you will be, all the patients who have been involved. And we do share the stories of some of our members, but it's not really a place for that pure peer support. It's more of a place for, hey, how can, how can I share my experiences too and get paid for doing so. Janet: 38:54 Okay. Awesome. Now you do, I know, embrace social media and I know that you have a Savvy chat on Sundays. What's that all about? Lilly: 39:02 Yeah, so Savvy chat is where we actually chat with folks for really like across the industry, which we chat with patient advocates as well, but we chat with people who are doing really cool things in the patient experience and patient innovation and patient feedback space. So we try to bring that to light so that we can spread the good word and share ideas so that we can start to see this movement happening across the industry. Janet: 39:33 Oh, that's exciting. All right folks, now you know where to go to get involved and let's direct people how to find them. Lilly: 39:39 Yes, so if you go to Savvy.co op, that is really all you need. You can go right there and our social media is there. We're on Twitter, Instagram and Facebook, and YouTube. But you can sign up very easily. You can create a profile. You also don't even have to sign up to see the gigs. You can go in just as we, because we want it to be accessible to everyone. So if you don't want to sign up, you don't have to, you can just sign up for the gigs that you're interested in. But of course we do hope you sign up and we do hope you become a cone or it costs $34 it's a one time fee to become a co-owner. And we do have financial aid available for those who are unable to afford the $34. So again, it's a very accessible platform and we're looking to bring diverse perspectives. And so patients, caregivers, healthy participants, all are welcome. Janet: 40:34 Oh well that's awesome. I hadn't thought about healthy people. Lilly: 40:37 Yes, well they're important to write for sewer and it's, and it's interesting because you know, at some point, unfortunately in our lives, most of us or all of us will become patients. And so getting actively involved in research, we certainly have a number of people on our platform who maybe are healthy participants because they've seen loved ones who have been through something and they all still want to be able to give back. Janet: 41:00 Okay, great. Well, I'm thrilled to have finally had the chance to talk with you, Lilly. And I am sure to put all of your LinkedIn and social links in the show notes for this podcast so people can find out more about the Savvy Cooperative and folks. Of course, it's Get Social Health.com if you happen to be listening on a podcast APP, you can come on over to the website and get all of this information. Lilly: 41:22 Well, thank you so much for having me, Janet. I love the work that you guys are doing. You've brought together, you really created such a vibrant community of health care professionals and I am honored to be a part of it and look forward to continued collaboration. Janet: 41:39 Thank you, Lilly. Announcer: 41:41 You've been listening to the Get Social Health podcast. This show notes are located at getsocialhealth.com to join our healthcare social media journey. Follow at, Get Social Health on Twitter and start a conversation.

Is it possible to take the diagnosis that turned your world upside down and turn it into a positive force in your life? My guest on About IBD is Lilly Stairs, Head of Patient Advocacy at Clara Health who lives with Crohn’s disease did exactly that. First diagnosed with psoriatic arthritis, it was only after Lilly’s symptoms weren’t improving and she was in and out of the hospital that healthcare providers finally discovered a Crohn’s disease flare-up in her small bowel. Lilly found the right mix of treatments to get her Crohn’s under control and now works with her team at Clara to connect patients to clinical trials.    Find Lilly Stairs at Blog: https://www.lillystairs.com/ Twitter: https://twitter.com/LillyStairs Instagram: https://www.instagram.com/lillyrosestairs/ LinkedIn: https://www.linkedin.com/in/lillystairs/ Facebook: https://www.facebook.com/lilly.stairs.56   Find Clara Health at: Twitter: https://twitter.com/Clara_Health Instagram: https://www.instagram.com/clarahealth/ LinkedIn: https://www.linkedin.com/company/clara-health Facebook: https://www.facebook.com/clarahealth Patients Have Power Podcast: https://itunes.apple.com/us/podcast/patients-have-power/id1321097377?mt=2   "About IBD with Amber Tresca" © Cooney Studio http://cooneystudio.com/

Lilly Stairs, Head of Patient Advocacy at Clara Health, joins me for a discussion about her life with multiple chronic conditions, her work at Clara Health, the importance of clinical trials, and her podcast, Patients Have Power. You can learn more about Clara Health at clarahealth.com and listen to Patients Have Power. Follow Lilly on Twitter @lillystairs and lillystairs.com. Run Time - 47:32 Send your feedback to feedback@justtalkingpodcast.com.

Aaron Jun - Head of Marketing at Clara Health - joins the pod for the first time to chat with Lilly about the incredible financial demands placed on patients.