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 a 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):
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):
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 email@example.com.
Janet Kennedy is the founder and host of the Get Social Health podcast series that began in 2014. Kennedy is the senior digital brand manager at Spencer Health Solutions and is a founding member of the Healthcare Podcasters Network. She also is a member of the external advisory board of the Mayo Clinic Social Media Network.