The "People Always, Patients Sometimes" podcast is presented by Spencer Health Solutions. We look at the evolution of drug development, clinical trials, and healthcare to recognize the important role that patients should have in the process. We talk with the innovators and disruptors in clinical research organizations, patient advocacy groups, pharmaceutical companies and independent thought leaders calling for healthcare transformation. Hosted by Janet Kennedy.
Lilly Stairs, Founder Patient Authentic
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
NORD - Supporting the Rare Disease Community
The National Organization of Rare Disorders has been helping patients, caregivers, organizations, researchers, and Clinicians for almost 40 years.
Introduction by Tom Rhoads (00:02):
There are over 300 million people living with one or more of over 6,000 identified, rare diseases around the world. A disease defined as rare in Europe affects fewer than one in 2000 people. Rare diseases are characterized by a broad diversity of disorders and symptoms that vary not only from disease to disease but also from patient to patient suffering from the same disease. Hi, I'm Tom Rhodes, CEO of Spencer Health Solutions. We are honored to have a special guest from the rare disease community on the "People Always, Patients Sometimes" podcast. Pamela Gavin is a Chief Strategy Officer for the National Organization for Rare Disorders. NORD has been educating, supporting, advocating, and building a community for the rare disease community for over 38 years. I know you'll enjoy learning more about NORD on the "People Always, Patients Sometimes" podcast.
Janet Kennedy (00:56):
Hi, my name is Janet Kennedy and I am your host for "People Always, Patients Sometimes," a production of Spencer Health Solutions. We have invited Pamela Gavin, Chief Strategy Officer of NORD, the National Organization for Rare Disorders to join our podcast. Patients with rare disorders often are overlooked by clinical research and drug developers, or have histories of misdiagnoses. Now that Coronavirus is impacting the globe and awareness of the fragility of persons with rare diseases is triggering teachable moments for all of us. Let's dive in! Welcome to "People Always, Patients Sometimes," Pam!
Pamela Gavin (01:33):
Thank you, Janet. Great to speak with you today.
Janet Kennedy (01:36):
I am so fascinated by your organization. I had no idea that literally there were hundreds and hundreds of rare diseases that you all are tracking and cataloging through your organization.
Pamela Gavin (01:49):
Yes, it's an amazing, exciting time within the field of rare diseases. We have over 7,000 known, identified rare diseases in the world today. And so NORD as patient advocacy organization supports all of them and the work that we do.
Janet Kennedy (02:08):
Can you tell me a little bit more about NORD itself and how it's structured? Is this an organization that provides information to people or are you proactive in helping resolve and learn and educate people about the diseases?
Pamela Gavin (02:24):
So we do some of both of those things and an organization established by patients and caregivers and advocates over 37 years ago, for some of the very things that you mentioned in starting your podcast introduction. And that is to advocate for improvements in it, interest in job development, device development, medical care, and services for people with rare conditions because very little was being done in the field. It was very hard to make it work economically for companies and researchers to study rare diseases because the patient populations were so small, but people were suffering tremendously.
Pamela Gavin (03:04):
So the community, the patient advocates got together and pushed for legislation that ultimately led to the Orphan Drug Act being passed in 1983. And that legislation established financial incentives for those to do research and study and develop products for people with rare conditions, the majority of which even today still live with a disease for which there are no FDA approved treatments. So we advocate for change. We advocate for people living with rare conditions to have access to proper diagnosis, treatment, and care so that they can live their very best life. We advocate for an environment that promotes research and innovation and fairness and equity across the entire community. As part of that advocacy work to promote access to that which is n
Transforming Digital Health Brands
Introduction by Tom Rhoads, CEO Spencer Health Solutions (00:03):
This past January, I had the pleasure to speak at the open innovation and health event at the JP Morgan healthcare conference. The event was sponsored by Mount Sinai Innovation, Ogilvy Consulting and Humble Ventures. Our panel discussed the consumerization of healthcare delivery, which was led by Ritesh Patel, Chief Digital Officer of Health at Ogilvy Consulting. Ritesh is an amazing thought leader in the digital health space and has been kind enough to accept our invitation, to be a guest on our podcast. And frankly provide is timely healthcare insights who could have known then the dramatic changes we've experienced over the last six months in healthcare. Simply remarkable. I hope you enjoy this conversation between Ritesh Patel and our senior digital brand manager, Janet Kennedy on the "People Always, Patients Sometimes" podcast.
Janet Kennedy (00:52):
Welcome to people, always patient, sometimes a podcast production of Spencer Health Solutions. Healthcare has come to a crossroads and it's time to start listening to new ideas. That challenge are always done it that way, thinking we hope you enjoy our conversations with the disruptors, the innovators and the transformers in clinical trials in healthcare. My name is Janet Kennedy and with me today is Ritesh Patel. He's the chief digital officer for health at Ogilvy Consulting. Welcome to the podcast, Ritesh.
Ritesh Patel (01:22):
Thank you, Janet. Thanks for having me. I hope you're having a good morning.
Janet Kennedy (01:26):
Everything is going great here a little bit rainy, but uh, I'm very happy to have that.
Ritesh Patel (01:31):
Janet Kennedy (01:33):
We've had a chance to run into each other. A number of times in social also engaging in the digital medicine society, which I find the Slack channel to be very, very engaging and very full of exciting people wanting to do new things.
Ritesh Patel (01:49):
Yeah. You know, I was funny when, when I first became a member and got invited to be a member of it, I thought, Hmm, that's an interesting way of engaging with your membership using Slack, but I'll tell you what you're absolutely right. It's a fantastic tool. And a lot of other member or societies should really look at that because the engagement level is fantastic. There's so many ideas being exchanged, people, helping each other announcements being made. I think it's a really smart move by the Dime Society to do that. So I'm very impressed.
Janet Kennedy (02:23):
I have used Slack for a couple of other organizations and companies that I've been in. And I constantly am surprised when people are like, Oh, just text me. You know, it's a conversation that just gets lost. It's very hard to have a group text with anybody and not drive folks crazy. And you are pushed by text, whereas Slack, you can engage with at your own pace and at your own level. So I don't know why they would prefer that, but I love the way Slack has enabled me for instance, to meet and engage with folks. And in our case to reengage after podcast interview over four years ago.
Ritesh Patel (03:02):
I know. We use Slack as a collaboration tool for Ogilvy Consulting for many years now. With the youngsters that we have coming in from universities, they're used to that. They're not used to us old fogies using email and mainly email. So it was interesting for me, and eye opening society would use it the way that are using it. It's very well done.
Janet Kennedy (03:26):
Well, I think the other interesting thing about the Digital Medicine Society is you don't join as your brand or company. You join as a person and everybody in essence is equal because it's only $50 to join. And it's an individual membership and you may or may not be speaking on behalf of you
Chronic Pain Patient Advocate Barby Ingle
Tom Rhoads: The patient perspective is an integral part of how we at Spencer Health Solutions approach our work from UX and human factors testing and designing Spencer all the way through our customer interactions. We always look at how the patient evaluates their experience with our system. In this episode of our podcast, we asked chronic pain patient advocate Barby Ingle, founder of the International Pain Foundation, to share her perspective on improving clinical trials. I know you enjoy this episode of "People Always, Patients Sometimes".
Janet Kennedy (00:37):
Hi, my name's Janet Kennedy and I'm your host for "People Always, Patients Sometimes", a production of Spencer Health Solutions. I am really looking forward to my conversation today with Barby Ingle. Barby is a bestselling author, a reality live-streaming personality, she lives with reflex sympathetic dystrophy, Migralepsy, endometriosis, and other pain disorders. Not a surprise. Barby is also a chronic pain educator, a patient advocate, and president of the International Pain Foundation. I am very, very excited to have Barby here today and also because she is an avid user of social media to share her story. Barby, welcome to People Always, Patient Sometimes.
Barby Ingle (01:21):
Thank you so much Janet for having me. I'm so glad to be with your audience today.
Janet Kennedy (01:26):
You know, we talked to a lot of different people in pharma, in health care and clinical research, and I have spoken with some other patients, but I have to say in reading your bio and the things that you're dealing with, while the title of our podcast is people always patients, sometimes I have to think that sometimes it feels like a flip for you, that it's really patient. Always people sometimes. Yeah. Well, I think I'm both all the time. Is it a situation where you literally can never not think about what you're feeling?
Barby Ingle (02:02):
I absolutely have to pay attention. I have to plan and be prepared, and luckily before I was chronically sick, I was already organized, so I definitely used the skills that I learned in cheerleading, including organization and responsibility in dealing with the healthcare challenges that I'm faced with every day. For sure.
Janet Kennedy (02:22):
Now, have your challenges come as a result of your adult life, or is this something you dealt with even as a teen or preteen?
Barby Ingle (02:30):
I was actually pretty healthy growing up and when I was 26 I developed endometriosis. And then at 29, I developed reflex sympathetic dystrophy, RSD for short, and really endometriosis was something I got through really quickly. You know, it was like, Oh, this didn't work. These shots didn't work. What's the next thing? A laparoscopy. Okay. That made my insides very mad and the spread. And then the final thing was a hysterectomy and I was like, take it out. I'm done. I can't take this. I got past it and I thought if I could pass that I could get through anything. And then I got hit with RSD and secondary conditions after a minor car accident, which triggered it. It's actually an autoimmune disease, but it was triggered by an automobile accident and that changed my life forever. That eight seconds.
Janet Kennedy (03:26):
Wow. Okay. I'm going to take a moment and really think about that eight seconds. And your life has changed forever. So what does that mean day to day? How are you impacted by RSD?
Barby Ingle (03:38):
So prior to the impact, I was in my vehicle, a small vehicle, and I was hit by a 16 passenger van. I saw the van coming, I saw him in my rearview mirror and I twisted my body and the van impacted my car and I blacked out after that. I went to court and he testified, he said he had never, he didn't see me and he never took his foot off the gas. So after he hit me, so from that moment I
Data Simulation Studies Reduce Risk and Cost for Clinical Trials
Tom Rhoads (00:03):
Welcome to the "People Always, Patients Sometimes" podcast. Our guest is Aiden Flynn. The founder of Exploristics. We worked with Aiden and his team to look deeply into how Spencer, in a simulation study of 6,100 cardiovascular patients, would impact both adherence and engagement. We wanted to determine that if adherence were increased dramatically as seen with the Spencer platform if we could improve the endpoints of stroke and persistence across the medication study. The results were outstanding and we have a white paper detailing that. Now we're excited to present Aiden as this is a very captivating interview. I know you'll appreciate Aiden's insights on "People Always, Patients Sometimes".
Janet Kennedy (00:49):
Hi, my name is Janet Kennedy and I'm your host for "People Always, Patients Sometimes" a production of Spencer Health Solutions, we're speaking with the Managing Director of Exploristics, Aiden Flynn. Exploristics provides analytics, statistics, exploratory data analysis, modeling, and simulation services. There is so much more to cover. So let's get started. Welcome to "People Always, Patients Sometimes", Aiden.
Aiden Flynn (01:13):
Thanks, Janet. It's a pleasure to be here.
Janet Kennedy (01:15):
We've actually worked with Exploristics at Spencer Health Solutions. And we're going to get into that in a little bit, but I'm sure your company does a lot more than the work you did with us. So do you mind taking a moment to tell us a little bit about yourself and about Exploristics?
Aiden Flynn (01:29):
I've been working in the pharmaceutical industry for close to 30 years now. I had an academic background. Then I worked at GlaxoSmithKline for 10 years, and then I set up Exploristics 11 years ago. We work with small and large biotech and pharma companies to help them optimize the designs of their clinical trials to make sure they're generating the right data, to turn that data into the evidence that they need to apply for approval for the drug or to support further investment in development.
Janet Kennedy (02:06):
So are you working with companies in a pre-protocol stage?
Aiden Flynn (02:10):
Ideally? Yes. I think one of the bugbears of many statisticians is that they don't get involved early enough in the protocol development stage. Our preference is to get in as early as possible on in doing that. We can actually influence many aspects of the protocol on not just the statistics section, where we might justify a sample size, for example.
Janet Kennedy (02:36):
So are you working with them to make sure that their drug is actually potentially viable or are you working with them to make sure that they're asking the right questions and gathering right data in order to prove better how the drug is performing?
Aiden Flynn (02:50):
Yeah, yeah, it's both. Ultimately everybody knows the kind of rate of attrition and clinical development, you know, more than 90% drugs feel to reach the market. Having already entered clinical trials on, I believe a large part of that is, you know, studies are not appropriately designed and I believe that statistics and statisticians have a big role to play in that. And I think the way we think the kind of logical and quantitative approach can impact lots of aspects of the clinical trial. So yeah, we get involved early to make sure the study is designed appropriately. We're measuring the right things. We're measuring them in the right way and making sure that we're doing the right analysis. We also work at the end of the process as well. So we'll take the data that are generated as part of a clinical trial and we'll do our statistical analysis to demonstrate that the drug works or, or otherwise. And actually we complete the feedback loop. So anything that we get in terms of the results from a clinical trial, we try to feed that back into the design process so
Joseph Kim The Digital Health Office at Eli Lilly
Hi, I'm Tom Rhodes, CEO of Spencer Health Solutions. Our podcast guest today is Joseph Kim, who is a member of the digital health office at Eli Lilly and the host of Lilly's podcast, The Elixir Factor. On our podcast, he talks about digital health innovation, the IBD challenge, sponsored by Eli Lilly, his podcast and cross-departmental drug development. We're proud to welcome a fellow podcaster to "People Always, Patients Sometimes".
Janet Kennedy (00:34):
Welcome to the "People Always, Patients Sometimes" podcast, a presentation of Spencer Health Solutions. Healthcare has come to a crossroads and it's time to start listening to new ideas that challenge our "always done it that way" thinking we hope you enjoy our conversations with the disruptors, the innovators and the transformers in clinical trials and healthcare. With me today is Joseph Kim from Eli Lilly. He has a title that's quite a mouthful. Senior advisor, digital health office, translational technology and innovation and we're going to talk about all of those things on the podcast today. Joe, welcome to the conversation.
Joe Kim (01:12):
It's great to be here. Janet, thanks for having me. I know it's been a little bit of a challenge to get our schedules to line up, but we're here now.
Janet Kennedy (01:19):
And I'm absolutely thrilled to have you here. We talk about you a lot over at the office because you are putting out a lot of great new ideas on your podcast, which we're going to talk about in a little bit and at events, conferences and trade shows. You're often a keynote or panelist member, but also imagine you're doing some pretty exciting things that Eli Lilly. You've certainly had a couple of changes in your title in the past few years, so things are very exciting where you are and I'd love for you to tell me a little bit about your history and how you got to Eli Lilly and then what you're doing now.
Joe Kim (01:53):
Yeah, sure. I mean I've only been at Lilly for about five and a half years, a little longer than that, which is a long time for me at any one company, but a very short time for anyone at Lilly. A lot of people who joined the company are there for 2030 35 years. So I'm still, despite for me, this being the longest role I've had at any one company, it's short time for others, so I still feel like the new kid on the block, but I joined their clinical innovation group when it was still in forest and that was run by Jeff Kasher who was the VP and well known in the industry. Still has, he hasn't faded into the background after leaving Lily, so he's still got his fingers in a number of pies helping other clinical research entrepreneurs and other pharma folks. I think I'm making sense of how to do things better.
Janet Kennedy (02:41):
Does that mean you have an intrepreneurial system going on at Eli Lilly where you are sort of embracing that spirit of entrepreneurship within the company?
Joe Kim (02:50):
Yes, but that's not really about how the company is set up, but there is plenty of room for people with that kind of ambition to develop new things and make the place better and better. Which is kind of a hallmark quote from our founder, which was to make Lilly a better and better place as you work here. So there's no like formal mechanism to do that per se, but everyone is encouraging it. It often happens and Jeff was one of those guys, created a big function where we spent a few years really focusing a lot of resources on trying to make clinical research to revolutionize it. And so that was, that was a great run for me. I did that for about three and a half years and then the company sort of switched gears to start trying to get some of these innovations in place so you can only dream for so long before you have to actually get some stuff done and apply it.
Joe Kim (03:42):
So there was