Patients can inspire the industry to innovate
Paul Tunnah interviews Brian Loew
As information becomes much more readily available and patients are able to connect with each other through social networks, many disease areas are seeing a significant rise in “informed patients”, who are armed with excellent medical knowledge about their conditions through first-hand experience. Sizeable communities have sprung up across many disease areas, providing support, advice and information.
In line with this, the pharma industry is facing mounting pressure to involve these educated patients more and more in discussions around their disease areas, or even to provide feedback on the very way in which it operates. However, it’s still an area that is fraught with dangers, with regulations severely limiting product specific discussions and pharma still trying to regain patient trust after high profile legal actions in many disease areas over drugs such as Vioxx, Seroquel and Avandia to name just a few.
However, Brian Loew founded Inspire with a vision for providing a conduit between these informative patient voices and the industry for benefit on both sides. Speaking with him, pharmaphorum found a man who is not only passionate about helping patients connect with each other, but also about for helping pharma engage with, and learn from, those patients who want to help the industry improve.
To listen to the full interview, please click on the play button below, with a shortened transcript of some edited highlights shown in print below.
PT: Hello Brian. So what is Inspire and how does it work?
BL: Thanks for having me. Inspire is an online community for patients and caregivers to talk about their medical conditions. It has two sides – one is the community and the other is access that we provide in a controlled way to pharma companies who would like to conduct research. The thing about Inspire that is particularly special is that the patient support side of it is created in partnership with over 70 non-profit national patient advocacy organisations. You could think of Inspire as having more than 70 disease specific channels, so when patients join they’re able to join multiple communities.
PT: You founded Inspire back in 2005, so what patient numbers are you now seeing?
BL: On a monthly basis we see about 700,000 unique visitors to Inspire, and we have 170,000 registered members. We use the word member, but typically those are patients and caregivers, with some medical professionals. We grow in two ways, one is by adding additional non-profit patient advocacy organisations (most recently we added the National Psoriasis Foundation and we’re about to add the Alzheimer’s Foundation) and the other significant source is new patients discovering Inspire through search engines.
“On a monthly basis we see about 700,000 unique visitors to Inspire, and we have 170,000 registered members.”
PT: What inspired you, for want of a better word, to set the project up?
BL: The original inspiration for this, founded with a few friends, Amir Lewkowicz and Walter Wlodarczyk, was what we believed was a real problem for industry – recruitment for clinical trials. We had the idea that if you could organise communities of patients by therapeutic area and ask them to volunteer for participation in trials you could not only find a source of patients who are highly engaged and active, but you could also solve many of the permission and privacy problems that existed with other methods. We found over time that it’s good for other things as well!
PT: How does it work in terms of involving existing patient groups?
BL: If you are a non-profit organisation Inspire will organise and operate the community for free, in exchange for owning the patient relationship. We take care not just of the money involved to run the community, but also the technology (hardware, software and hosting) and expertise around how to properly moderate. We found is this is very repeatable and we’ve become very good at launching new communities, so I think the Alzheimer’s Foundation was our 72nd partner organisation.
PT: Which areas do you see as the most active in terms of online patient to patient communication?
BL: We see a great deal of activity in oncology, simply because of the intensity of the disease. Another area that’s very active is rare diseases and I believe that’s because for these people it’s often difficult to find someone like you. We surveyed our rare disease community of around 10,000 patients and 22% of those surveyed said that the first time in their life they met someone else with their rare disorder was in Inspire. Other conditions, which are chronic but not fatal in the short term, probably have a lower level of engagement. But there are exceptions to that, for example psoriasis is an extremely active community even though it fits that profile.
“The patients are really bringing the value to one another, talking with people who know what it’s like.”
PT: What do you think Inspire brings to the patients above and beyond that gained from their individual communities?
BL: The patients are really bringing the value to one another, talking with people who know what it’s like. But one subtlety here is that all of us have interest in multiple medical conditions, so even if you’re in perfect health you have friends or family who have medical conditions important to you. You could simultaneously be the sufferer of osteoporosis, the parent of a premature baby and a friend of someone with cancer. So Inspire lets you join multiple communities and add interests over time.
PT: How does the commercial side of Inspire work?
BL: There are three things that we sell broadly speaking, but we never sell databases of patients or their personal information. The first thing is clinical trial recruitment, where we inform Inspire members of trials and screen interested patients to qualify them before introducing them to the pharma company. The second category is what we call insight, which is really learning from what the patients have to tell us through things like surveys and videos. The third category is awareness, where pharma or biotech companies sponsor individual communities. We’ve had terrific feedback on these offerings, probably because the patients who get involved in these projects are typically highly engaged and active, which carries over to the projects with pharma.
PT: How do you protect patients who get involved in these commercial projects?
BL: We believe that protecting the patients is primal, absolutely the most important thing we do, and we are set on not compromising that for the sake of commercial projects. There haven’t really been issues with this, but we have two over-riding principles, the first is that patients should always be in control of whether or not they want to participate in something, so we explicitly ask them and don’t do anything unless they explicitly say yes. The other is that we try to be open and transparent to never let a patient get misled, we tell the patients who the customer is and what they’re doing and let them choose to participate or not.
“…industry is now recognising the huge role patients can play in drug development…”
PT: Where do you see Inspire going in the next five years?
BL: The patient community side is something we’re proud of and want to continue to grow and there are some holes to fill where we don’t yet have strong communities, for example diabetes and, until recently, Alzheimer’s. We also want to be a good provider to pharma, because when you hear our patients talking about the drugs they take you can see how grateful people are for therapeutics that really work. So I truly believe that we can do something to improve the quality of medicine by properly valuing the contributions that patients can make by participating.
PT: And finally, what are the key things you’ve learnt over your time with Inspire?
BL: One thing is about the industry itself, in that over the last five and a half years we’ve seen a notable change in the way that industry looks towards user generated content and social media. In the beginning there was curiosity but some hesitation, but we’re now meeting with brand managers who are pushing us in terms of gaining community feedback. I’m pleased to see that industry is now recognising the huge role patients can play in drug development because they’re willing to be open and talk about their experiences and I’m thrilled that drug companies want to listen to what those patients have to say.
About the interviewee:
Brian co-founded Inspire in 2005 and is its CEO. Previously, Brian was responsible for technology strategy for The Washington Post, where he developed innovative products and acted as a technology liaison between the newspaper and washingtonpost.com. Brian has been an Internet entrepreneur since 1994 when he founded worldweb.net, a content management software company that created and launched over 100 websites for major publishers including U.S. News &, World Report, Hachette Filipacchi, Time Warner, and The Washington Post Company. Brian has degrees in physics and economics from The George Washington University. He is a regular author and speaker on topics related to e-health, patient empowerment, and healthcare social media.
Inspire is a privately-held company based in Princeton, NJ, partnering with organizations including the Ovarian Cancer National Alliance, National Osteoporosis Foundation, Arthritis Foundation and National Organization for Rare Disorders, among others, to provide online patient communities in a safe, privacy-protected environment. With more than 70 exclusive national patient organization partnerships and over 170,000 members, Inspire has created the most authentic platform for patient engagement.
How can pharma involve patients more in decisions?