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Inspire CEO Brian Loew speaks about online patient communities

January 10th, 2011 by David E. Williams of the Health Business Blog Transcript

David E. Williams: This is David Williams, co-founder of MedPharma Partners and author of the Health Business Blog. I'm speaking today with Brian Loew, he's CEO of Inspire, a provider of online health communities. Brian, thanks for being with me today. Brian Loew: Likewise, thank you. Glad to be here. Williams: Tell me about the history of Inspire and what you offer. Loew: We're a five year old company founded by a group of friends who were all interested in health, the way our personal experiences have been shaped by difficult health issues and the way that we could use the web to improve things. When we started Inspire we knew that one of our goals was accelerating clinical trial recruitment. That was the business side of the idea, but one of the things that ended up helping us out a great deal was figuring out the model for how to connect with patients: partnering with non-profit patient advocacy organizations. That has been a big part of our model and a real differentiator for us. Today we have 70 non-profit patient advocacy organizations as partners. We continue to seek out the top organizations in every single therapeutic area. For example we just signed the National Psoriasis Foundation, which is a wonderful organization, the leading psoriasis group. As part of that we're migrating over an existing ten-year-old message board that they have for psoriasis and integrating that into Inspire. They will be the 71st partner and are a good example of the way that we work with these non-profits as partners. Williams: I've heard a lot in the last couple of years about the "e-patient" movement. You're converting message boards so obviously it's not as though patients have just come online, but I would be interested in your perspective on so called e-patients and what role Inspire plays with them.

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Loew: Obviously we believe strongly in it. I think at some point we're going to drop the "e" and just call them patients because what we see is that virtually all patients go online seeking information about their health. What we've learned is that many, many patients read online. Not all patients join and become members and share information about themselves. Often that's an evolutionary process. However I think the behavior of searching for information online and becoming interested in actively managing their own health is something that more and more patients are doing. I don't resent the word "e" but I just think that at some point we're going to realize that all patients are doing that and we can drop the "e." Williams: Talk a little bit about the motivation for patients going online. Is it mainly for health information, and to what extent are they looking for support or advice from peers that might make them join an Inspire community, for example? Loew: What we've learned about this is different than what we originally assumed. In the beginning we assumed it would be primarily about emotional support. There is certainly that but it's actually a great deal about practical support, dealing with all of the issues in their life. Issues range from making a decision about which chemotherapy regimen to use to how to travel with a wheelchair, how do I tell my children I have cancer, what's the best way to deal with thirst or dry skin, to much more traditionally serious questions like what's the right direction I should take in the course of my cancer treatment? I would put all those under the practical informational issues about dealing with disease. Certainly on the emotional side there's a great deal of connecting with one another, sympathy, empathy, being with other people who know what it's like. Williams: How long are people typically in one of these online communities and how do the relationships evolve over time? I'm also interested in what happens when someone doesn't recover. What's the dynamic within the community? Loew: It absolutely varies according to therapeutic area. We're often asked how active members are. I've come to realize that what we often care about is how responsive patients are. For example we have a very strong lung cancer community with around 9,000 members. It's extremely active and intense. Then we have other communities that are equally good for conditions like osteoporosis. Someone who has osteoporosis may have it for the next 50 years but

66 Witherspoon Street Suite 402 Princeton, NJ 08540

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that's not the case with someone with lung cancer. So what we see is that people are engaged in the community and they're engaged and responsive and active but the behavior is really different, and the needs of someone with lung cancer are different from the needs of someone with arthritis or osteoporosis or psoriasis. Williams: You talked about the original business idea being for clinical trial recruitment. How have things evolved and how is the pharmaceutical industry involved in Inspire and with e-patients overall? Loew: The clinical trial recruitment model works. Pharmaceutical companies like it because you have a targeted patient population, but we've learned over time is that there are additional things that we can do with industry, for example in the area of patient insight. Since we have a deep relationship with patients we can learn a lot about the patients and their motivations and the way that they engage with their disease. This notion of patient insight is new for us and we're doing more and more of that. One of the things that's happening over time is that the patients are very prolific and so they're creating a huge amount of content. Our Inspire members are writing more words each day than in the daily issue of The New York Times. Our members are writing about 300,000 new words each day and all together we have about a quarter of a billion words in Inspire right now. What we've learned is that in those words and in those data are a tremendous number of insights. There is value from that, which sounds obvious to say now, but in the very beginning we didn't anticipate how much valuable content like that would exist in Inspire. Williams: Talk about how you actually use that information. I know there have been some articles, in particular a series that the Wall Street Journal wrote about free websites and how they collect data on people that are used in ways that those people might not necessarily want. Can you describe it from an Inspire perspective and whether people are worried about that? Loew: We think that protecting patient privacy and control is the most important thing to do. We believe we have an ethical responsibility to go far beyond our legal responsibility, so we're always very careful to preserve patients' control. I'm using the word "control" because while we believe that privacy is necessary, it's not sufficient. It's not sufficient to let a patient turn their privacy on and off. What's crucial is for patients to accurately believe that they are in control of who has access to information about them.

66 Witherspoon Street Suite 402 Princeton, NJ 08540

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[email protected]

The other thing we commit to do is to never trick our members. I say "trick" because we have seen examples online and elsewhere where patients have revealed more than they wanted to reveal or shared things in ways that they didn't expect to. We want to make sure that never happens with Inspire members. What we say is that anytime we're sharing or revealing or using individually identifiable information, we will never do so without your express permission. We also never sell individual identifiable information about our patients. What we do is provide opportunities for patients to share information through surveys and interviews and things like that. When we do so, we tell those patients what we're doing and what it will be used for and ask them if they'd like to participate. Only if they raise their hand and say that they want to participate do we share the information that they share with us. Williams: Fast forward about three to five years and let me know how you think Inspire will evolve to that point. What sort of potential will you realize? Loew: We'll continue to add therapeutic areas so that number of 70 partners will grow substantially. I'd like to think that at that point more and more of the dominant national patient advocacy groups are Inspire partners. We are also continuously improving our tools for interacting with patients and for analyzing the information we have for engaging the patients. So I think the community experience the patients have will continue to improve, which is really valuable. I'd like to see Inspire recognized as the place to be if you are involved in a disease as a patient or caregiver. I hope it will be viewed increasingly as a strong resource for industry to engage with those patients. Williams: I've been speaking with Brian Loew, CEO of Inspire about their online health communities. Brian thanks so much. Loew: Thanks.

66 Witherspoon Street Suite 402 Princeton, NJ 08540

(800) 945-0381 toll free

[email protected]

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