Inspire - Building Rare Disease Patient Communities
Welcome to “People Always, Patients Sometimes”, a podcast production of Spencer Health Solutions. I’m Tom Rhoads, CEO of Spencer. This year, we are pleased to be presenting a series of interviews with patient advocates, inspiring leaders, and influential patient organizations to ensure that we always live our motto of “people always, patients sometimes”.
On the podcast today, is Brian Loew, the founder and CEO of Inspire. Brian created Inspire 15 years ago with a goal of accelerating clinical trial recruitment, using safe, trusted online social networks, organized by medical condition for patients and their caregivers. Today Inspire has 110 health association partners and over 2 million members. I hope you’ll enjoy our conversation with Brian on “People Always, Patients Sometimes”.
Janet Kennedy: (00:56)
There are over 200 million people living with one or more of over 7,000 identified rare diseases around the world. Rare diseases have a wide diversity of disorders and symptoms that can vary not only from disease to disease, but also from patient to patient suffering from the same disease.
Hi, I’m Janet Kennedy with Spencer Health Solutions. I am so pleased to welcome a special guest from the rare disease community to the People Always, Patients Sometimes podcast. With me today is Brian Loew, who is the founder and CEO of Inspire, a patient community unlike any other. Brian, welcome to the podcast!
Brian Loew: (01:39)
Thank you. It’s really great to be here.
Janet Kennedy: (01:41)
You really have been quite instrumental in pulling together patients who have rare diseases and providing them an online community. And that is an amazing thing and an important aspect of caring for patients in this crazy world that we’re in right now. I’d love to know a little bit more about how you came to found Inspire, and then let’s talk about what you’re up to.
Brian Loew: (02:08)
Sure. When we started Inspire about 15 years ago, it was out of our observation that there was a real need for patients and caregivers to connect safely online. And that there weren’t great spaces for them to do so way back then. And it seems like a long time ago, what you found at that time was online message boards, discussion groups. Many of them were kind of Yahoo message boards. A lot of them are unmoderated, and yet you saw the need was enormous. Patients and caregivers were trying to connect around their health. And we saw that there was a real opportunity, I think, to provide this safely and with scale, a reliable platform or patients and caregivers could join and talk about their medical conditions.
Janet Kennedy: (02:49)
You brought something interesting to the table in that your background is in technology. You are not a medical professional.
Brian Loew: (02:57)
That’s right. I had a lot of interest in health and so did my co-founders, but I didn’t come at this from the perspective of a doctor or a scientific researcher. It was more of a technology background. That’s right.
Janet Kennedy: (03:07)
So that probably gave you a great leg up in creating something that was going to work. And you’re much more aware of the issues involved, but how did you handle the medical side and even the legal and HIPAA related side?
Brian Loew: (03:21)
Sure. One of the things we did from day one was we partnered with experts in this case, national patient advocacy organizations, which is, you know, there are about 2000 of these in the United States and they’re organized often by specific disease. A very large number of these non-profit organizations are in the area of rare disorders. And in fact, our very first partner was the Children’s Inn at the NIH, which is this extraordinary place at the National Institutes of Health to help support the families of children who are undergoing treatment, usually for rare disease or cancer at the NIH. This expanded to other national patient advocacy organizations like women, heart and the ovarian cancer research foundation and osteoporosis foundation. And over time, we now have 110 of these partners and about half of them are in rare disease.
Janet Kennedy: (04:13)
So for instance, something like American Heart Association or American Cancer Society, those are very, very large organizations. But on the other hand, I imagine there’s obviously more than one kind of cancer or one kind of heart issue. So do they have subgroups underneath an umbrella of their organization?
Brian Loew: (04:33)
You’re absolutely right. That as you said, if you look at the 7,000 or some estimates are now that there are as many as 9,000 rare disorders, there was enormous overlap with rare types of cancer. For example, where people have rare conditions that might be, you know, historically called a kind of cancer and now recognized as a rare subtype. And then there are other things that have always been thought of is rare disorders, things like Wilson disease or Von Hippel-Lindau syndrome or scleroderma or sarcoidosis or Ehlers Danlos syndrome. And we have partners in all of those areas. And I think what we’re coming to realize is that kind of, as you pointed out, rare diseases are quite prevalent, even though they’re officially defined as conditions for which there are less than 200,000 people in the United States with a disorder. It’s estimated that one in 10 humans have one or more rare disorders. And so, you know, we’re talking in the United States of over 30 million people who have a rare disease.
Janet Kennedy: (05:26)
I’m going to ask a lay person’s question here, and I know you are not a medical professional, but I’m going to take a great leap. It’s not that there are now nine or 10,000 rare diseases that are new it’s that our science is getting better and better, And we’re able to much more specifically identify what these issues are?
Brian Loew: (05:45)
Exactly Right. Exactly Right. And a lot of this is due to incredible advances in genetics over the past 20 years, the identification of things, which before weren’t known to be conditions, syndromes, or disorders as such. One of the things that we see in Inspire all the time is what’s come to be referred to as the diagnostic odyssey. Patients will have a collection of symptoms. It’s clear that something is going on and what the patients are wondering is, do I have something that’s recognized as a disease for which hopefully there’s treatment? Or am I alone? Am I an ‘N’ of one? There’s some things that are often observed only in a single person. And this is actually kind of an incredible aspect of rare disease, which is that many of the patients who find Inspired do so because they’re searching online, searching for their own symptoms and what they discover is conversations going on in Inspire among other people who have the same rare disease that they do. And so there are many people on Inspire who have written to us and said, I discovered that I have this certain condition by connecting with others in your communities, and then going to my doctor and then getting genetically sequenced and discovering that I had a certain condition and that’s really gratifying.
Janet Kennedy: (06:55)
Well, and while it’s nice to finally put a name to the thing that you’re feeling, it must be incredibly frustrating if there isn’t actually a treatment or a cure for that. So how is Inspire really helping to change the game?
Brian Loew: (07:11)
Right. As your listeners may know, only about 5% of rare diseases, 5% of those, you know, seven or eight or 9,000 actually have a treatment. And so the vast majority are known to be real conditions often with genetic markers, but there are not good treatments for them. So there’s a real effort by scientists and industry to help find treatments for as many of these disorders as possible. One of the ways we’re trying to help is we developed something called the Inspire Research Accelerator, and you can check it out at Inspire.com/accelerator where we’ve offered to academics, to scientists around the world. If they’re working on a particular disease and they need help finding patients to participate in the research, we will invite our patients to participate in their research. There’s no charge for this. Our goal here is really to help advance the science. It’s something that the patients are happy about as well, because by and large, if you ask members of Inspire what they want most it’s to be as healthy as they can possibly be. And so they are very motivated to help support scientific discovery.
Janet Kennedy: (08:13)
How long does scientific discovery really take? If you are approached by a pharmaceutical organization or even one of your partner organizations to say, “let’s try and get a solution here.” I mean, it’s years and years?
Brian Loew: (08:28)
Years and years. In some cases, decades, right? To sort of understand the condition and the underlying mechanism, and then to begin to explore what treatments are possible. And then as you know, once a drug candidate is identified on average, it takes 12 or 13 years to bring that new treatment from concept to market. And there are many failures along the way. So it’s a marathon for sure. It takes a long time to figure these things out. Most of the time, by the way, one of the biggest bottlenecks historically has been that a researcher who has great ideas, isn’t able to find enough patients to participate in research. And then in rare disease, sometimes the number of patients required could be dozens that it’s fairly small, absolute number, but the conditions are so rare that it can be difficult to find 10 or 20 or 30 people for the rarest of conditions.
Janet Kennedy: (09:19)
Have you found that you are building a community where the patients are predominantly coming to you or do you actually have to actively recruit patients with a certain disease or condition?
Brian Loew: (09:29)
It’s mostly the former. So the way that a lot of patients discover Inspire because they’re searching online. And as I mentioned, they find these conversations that are already going on. The second way is that these patient advocacy organizations. So for example, one of our partners is the Wilson Disease Association, Wilson disease affects 10 or 11,000 people in the United States. And it’s characterized by excess copper in the bloodstream. This is an extraordinary organization that we work closely with many of the patients with Wilson disease learn about Inspire through the community that we provide with the Wilson Disease Association. And then, you know, finally many members tell their friends and family about the community as well. And so there’s growth that way also.
Janet Kennedy: (10:11)
So this isn’t necessarily a community that is exclusively for patients?
Brian Loew: (10:17)
Correct. I’ll stand on my soapbox for a minute and say, I think all of us in society need to recognize caregivers for a moment. Every single one of your listeners probably either is, or has been, or will be a caregiver at some point in their life. In some cases, half of the members of Inspire are caregivers. And many people of course, are the caregivers for one condition and the patients for another condition. So very much so Inspires a place for patients and caregivers and researchers and medical professionals.
Janet Kennedy: (10:45)
Well, that sounds like a very supportive organization of people. And I think one of the things that you, our newest members would find is the support system.
Brian Loew: (10:56)
Right, right. A lot of people arrive shortly after they’re diagnosed. There’s this fire hose of new information. They’re trying to learn as fast as they can and make decisions oftentimes with all this fresh information. And the support is incredible. People often say to us that they no longer feel alone or for the first time they found other people who really understand what they’re going through. And there’s a ton of support there. I want to point out here that what we’re doing is not a substitute for the doctor patient relationship or medical treatment. I think what we’re helping support is the practical and emotional support as well as patients understanding how to deal with this flood of information and what questions they should ask their doctors and how they should think about their treatment decisions.
Janet Kennedy: (11:41)
I imagine that whatever condition you have, eating the right things or avoiding the wrong things, even simple things like how to exercise or whatever – that’s not the kind of information you’re going to find from your doctor simply because they’re busy. They might give you a link or they might give you a handout. But a lot of the very specific “I have problems with my sleep,” or “what can I be eating that won’t taste bad?” or those really day-to-day living things you want to be talking, not necessarily to your doctor, because you don’t expect them to solve that problem. This is about living. And I think only somebody who’s been in that situation would be able to give you that kind of detailed advice.
Brian Loew: (12:28)
That’s exactly right. If you were trying to figure out how to get on an airplane with your wheelchair, you know, how do I travel with a wheelchair? Who’s the best person to help you with that? It’s probably someone who has done that before, who understands it. If you’re trying to get reimbursed – and there’s a lot of discussion about trying to get reimbursed for conditions from insurance companies and that kind of thing. There are a ton of practical tips about that. On a related note, we recently looked at the question of what should I know before I go into the hospital, if you have a planned hospital visit and we had this incredible outpouring of really, really practical tips about how to deal with your hospital stay. And a lot of these things are just better told from people who have been through them before and giving practical advice. I think most doctors would agree that that’s not meant to replace what the doctors are providing it’s to help support it.
Janet Kennedy: (13:16)
Well, we are obviously dealing with COVID and will be for a while. Your community theoretically, should be at the front of the line for the vaccine. Have you found that to be true or does it vary from state by state?
Brian Loew: (13:31)
We’re in the midst of a really, really wide survey of all of our members about the COVID vaccine. And if you’d like, I can share with you afterwards and you can put it in the show notes. It’s really extraordinary. What we’re finding is that – this is an important point I should mention is that when you listen to the news about the COVID vaccine, oftentimes we’re told things like on average, people are experiencing the following. And what we found is that those averages oftentimes are not really as useful as specific situations. So we’re asking members of Inspire about their willingness and attitudes about getting the vaccine, their difficulty in getting, getting it when they’ve decided that they want it. And then there are concerns about getting it. And oftentimes these concerns are very different for different diseases. For example, we have many members who are taking immunosuppressive therapy, and there’s a lot of question and concern about whether the COVID vaccine will affect them differently than people who are not taking immunosuppressive drugs and those kinds of conversations. We’re still so early in the vaccine, there is not a great deal of published data about the relative risk for people with different diseases. So there’s a real thirst for information and people with different medical conditions have different, but very specific questions.
Janet Kennedy: (14:43)
So I imagine that that survey anecdotally is going to be extremely valuable, but is there any organization that’s actually funding research into how the rare disease patient is dealing with COVID?
Brian Loew: (14:56)
We’re funding the survey ourselves, and we’ve also decided to make it a kind of gift to the world. So we’re going to open source the data, and we’re going to make all of these available to the general public, to browse through the aggregate anonymized results. And then we’re also going to make the data sets available to the public and to researchers who want to explore it more deeply. One of the ways I think we’ll be able to contribute is that we’re breaking all of these data out by specific disease. So if you want to understand the experiences of patients with one rare disease versus another versus cancer versus chronic conditions, and looking at by age, gender location, experience with treatments and diseases, you’ll be able to look at all of these data and kind of interactively explore them. I think it’ll be a really great research experience.
Janet Kennedy: (15:41)
How many patients have participated in the program so far? And are you specifically looking at patients, are you asking caregiver information as well?
Brian Loew: (15:49)
As of today, we have about 25,000 who’ve participated in over a million data points, but we’re only part way through. So I expect that number to grow a great deal and for it to be a, hopefully a really valuable resource.
Janet Kennedy: (16:02)
Oh, this sounds pretty impressive to me. I think it’s going to be exciting.
Brian Loew: (16:05)
I’d love to share it. We’re a couple of weeks away from sharing it publicly and I’ll give you the information for that.
Janet Kennedy: (16:11)
All right. That’ll be very exciting. And I look forward to reading some of it myself, not with full understanding necessarily, but I definitely would appreciate getting that inside look. So tell me about clinical trials in general; is that the primary focus of Inspire?
Brian Loew: (16:27)
When we started, that was a lot of what we did and we still do that. You know, the problem remains that recruitment for clinical trials is never as fast as, as everyone wants it to be, right? The patients, the scientists, doctors, companies that are developing treatments all want it to move faster. One of the biggest problems has been finding the patients and inviting them to participate. So we still do that, but equally important. And maybe a big focus for us now is understanding the health journey that all of us are on understanding the information about diseases and their progression and which treatments work and why. And so we’re putting a lot of our resources towards these health journeys by disease, with equal of helping patients understand their own journey and helping science with the data that’s required to help make discoveries. So I would say actually more of our energy now is in that area and it’s producing great results.
Janet Kennedy: (17:17)
You know, COVID has forced a big sea change in how clinical trials operated in those that were able to embrace a more decentralized experience for the patients seem to be rebounding a little faster than those that are classic come into the clinic. What’s been the response from your community, and do you think that the patients have spoken and we’re going to see a lot more decentralized trials in 2021 going forward?
Brian Loew: (17:50)
Yeah, I would say yes, yes, yes. Some people have pointed out, this is maybe a silver lining of COVID. If there is one, is that what began years ago? And people like Craig Lipset have been involved in helping this happen more quickly. What began years ago is now jumped ahead by maybe 10 years or even more the idea of doing remote trials when possible is something which is now happening much, much more than it was one year ago. I think it’s a great thing. Patients like it, most researchers like it, and I’m just thrilled that it’s happening so much faster now.
Janet Kennedy: (18:22)
I think that it’s going to make a huge difference in being able to recruit particularly in the rare disease community.
Brian Loew: (18:29)
That’s right with rare disease, geography is a huge factor. In some rare diseases, the number of scientists working on the diseases is tiny, and if those people live a thousand miles away from patients that can be a real barrier to participation. And to the extent these trials can be done remotely, it solves that geography problem oftentimes, and can really accelerate progress.
Janet Kennedy: (18:50)
If you had the opportunity to share with researchers one core piece of advice on working with the rare disease community, what would you recommend?
Brian Loew: (19:02)
I would say please work with the patients in designing your research, and do that as early as you possibly can. If it’s clinical trials, that means inviting patients to participate in protocol design. If it’s developing therapeutics, work with the patients themselves and ask them questions and ask them to co-create solutions. There is an enormous amount of wisdom among the patients themselves, and also a huge amount of willingness to participate in. What we hear from patients oftentimes is that they wish they were consulted or involved in developing these because they have a lot to contribute and often are not asked.
Janet Kennedy: (19:35)
All right. So that’s, I think the key thing is consider your patients partners, and not numbers.
Brian Loew: (19:44)
Janet Kennedy: (19:45)
Alrighty. Well, I can’t thank you enough for joining me on People Always, Patients Sometimes to share the story of Inspire, and I will definitely look forward to getting the link to the study that we will post, even if it’s after we publish on the podcast, because I’m very excited to hear how that turns out.
Brian Loew: (20:06)
Thank you, Janet. I really enjoyed talking with you.
Janet Kennedy: (20:08)
Thank you very much for being here, Brian.
Janet M. Kennedy is a healthcare marketing and social media professional. Janet is the Senior Digital Brand Manager for Spencer Health Solutions and hosts multiple podcasts including Get Social Health and People Always, Patients Sometimes. She is a member of the External Advisory Board of the Mayo Clinic Social Media Network.