The president of Inspire talks about the role of online communities in the consumer-directed healthcare push.
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How important are online communities in the customer-driven-healthcare push? Dave Greene: Well, it's incredibly important and you know if you went back 15 years ago as a consumer you wouldn't be able to get a copy of the PDR even to learn anything about your condition and five years ahead of that, ten years ago if you walked in with a printout from WebMD or similar website into your doctor's office, half the time you would be met with scorn or discomfort from that. But this is changing and now today, people are finding all sorts of valuable information online. What we do is exclusively online communities connecting patients to other patients and importantly also caregivers, here I mean family members who are taking care of a loved with it, with an illness, to other caregivers, and that's a no way a substitute for authoritative medical information and it's a no way a substitute for a doctor-patient relationship, but it can be a great complement to both of those things. Do you think that online communities can affect a patient's outcome? Dave Greene: We see that there are lots of research in this area. Now it is started with in person patient networks and of course, if you have got a common condition, there have been wonderful cancer communities for instance that meet other wellness communities, local organization where patients can get together on in a real live environment at Church or a local community center and talk with other patients going through something similar. That's harder with a rare disease, and so we support organizations today, including oncology organizations or the National Osteoporosis Foundation, very large organizations. We also support NORD, the National Organization for Rare Disorders and there if someone with cystic fibrosis, you may not someone else in your local community who has CF. Being able to find, reach out online someone like that. You have the same kind of outcomes that people have seen for years with in-person communities. I'll give a personal experience here, because this is a part of what drew me and to inspire, which is I do have a rare disease myself. I have a condition called Von Hippel-Lindau disease, and that's where I started out my presentation with today. Von Hippel-Lindau disease affect 15,000 people worldwide. It's very very rare disorder, genetic disease that causes tumors throughout the body. I have a very rare manifestation of that disease where I get pancreatic lesions. So they are 15,000 people who have that, there maybe a couple thousand people in the entire world who have a similar kind of condition. We support and have an online community for the Von Hippel-Lindau Family Alliance, which is the umbrella organization for people like me and when I most recently went to my doctor, just last week, I discovered that I had a large lesion in my pancreas and I posted a comment in and most important saying that I was worried. I was waiting to hear back from a wonderful doctor Steve Libutti, at NIH about what that scan, but I was sitting there you know really anxious to hear the result. And within 24 hours, a wonderful woman, 54-year-old woman from Texas, who tells me that her pancreas is more cyst than normal tissue and has been since 1980. I am responded back to tell me her experience, and within 24 years of that we had another gentleman from Michigan who responded back to say, he is been living with pancreatic cysts for now 15 years, and that kind of connection provided, not only wonderful emotion support and help me -- while I was waiting hear back from Dr. Libutti, but also meant that when I have been went in to talk to Dr. Libutti, I could say, hey! Here are some other cases here. You may not know this woman from Texas or this man from Michigan, but here is been their experiences and I wonder if it's similar or different from what I will be going through. What is the key to making an online community a success? Dave Greene: We spend two years building this. Our first community
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