Gilles Frydman is one of the leading ePatients. He started and runs ACOR (Association of Cancer Online Resources) and has discussed the role of engaged patients with rare diseases at the last few Health 2.0 Conferences. We’ll be hearing more from Gilles in the US this year, but first we’re inviting him to present at Health 2.0 Europe. His twitter name (@kosherfrog) reveals Gilles’ ethnic and national background, so we thought he was a very appropriate person to discuss both the future of online patient activism, and the Health 2.0 scene in the US and Europe.
Matthew says: Gilles, you’re best known for the ACOR list-servs which now see over 1.5 million emails a week go out in around 150 different cancer groups. Can you tell us how it started?
Gilles says: In 95 my wife was diagnosed with breast cancer. She came home and told me of the diagnosis and I immediately went on the Net to find information about the disease and treatments
Matthew says: And what did you find?
Gilles says: Within 30 mins I had the BREAST-CANCER list and joined it. I didn’t follow protocol and jumped right in and asked about the diagnosis and what we were told was the treatment for it. Within 2 hours I had enough info to call back the surgeon and tell her we were going for a second opinion and that we would wait for the surgery she had told us was absolutely necessary. She “fired us” on the spot. Because we went for a second opinion!
Matthew says: I’m not surprised. Probably might happen today too
Gilles says: But as a result of what I was told my wife didn’t have chemo. She didn’t have a radical mastectomy. She didn’t have brain, liver and bone scans. All of which would have been TOTALLY USELESS for the type of BC she was diagnosed with. Thanks to informed patients, she just had a lumpectomy and radiation. No piece of cake but MUCH LESS than chemo. So, that started me
Matthew says: So is that a typical interaction on ACOR?
Gilles says: YES. But ACOR can go into incredible depths. Not just pure info but also deep info mixed with profound human feelings
Matthew says: Can you give some examples
Gilles says: Just yesterday on one of the pediatric lists, a mother was writing about her son’s latest situation where all the doctors have now told them there is nothing more to be done. In short the woman writes about what can only be the worse possible situation for a mother, but she does so in an incredibly rational fashion.
Matthew says: What’s the scale of ACOR activity now?
Gilles says: ACOR is a little under 60K active subscribers, over 165 groups, from 60 members to 3,000. Some of the groups generate close to 200 messages a day
Matthew says: What does it cost to run ACOR in both money and time, and how is it financed?