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?
Gilles says: The yearly budget to run ACOR and all the services associated with the lists is currently about $150K. But this year will be much more due to work we are doing to increase the number of services, redoing the website, etc. So this year we will probably spend around $300K for internal services and then hopefully we will receive additional funding to do some truly revolutionary work to make our content accessible to many more people.
Matthew says: Where does that money come from?
Gilles says: In good years the money comes from Pharma educational grants and private donations. We have been blessed in the past with money from large family foundations.
Matthew says: And in bad?
Gilles says: And we did an amazing fund raising event involving some of the best contemporary artists in America, including Richard Serra, Elizabeth Murray and Chuck Close. In bad years, like 2008 and 2009 it stops.2009 was terrifying. No contributions came in. I kept the organization afloat.
Matthew says: Unless you’re much richer than you’ve been letting on that’s not a long term plan! What are you doing regarding fund-raising in 2010
Gilles says: A call for help in late December has helped produce some relief. And many contributors have asked to be notified regularly for the need to donate again. So, in 2010 I hope more individuals, foundations and companies will help us, considering that we offer truly unique services to cancer patients and caregivers. Informed and activated patients and caregivers are much better participants in the healthcare system. ACOR helps make this a reality.
(Matthew’s note—you can donate to ACOR here)
Matthew says: There are several other Health 2.0 sites focused on cancer. In fact you’ve said that the Health 2.0 movement isn’t that new or different. How does ACOR compare to the “newer” community sites that use profiles and Facebook like tools. And would you consider heading in that direction?
Gilles says: The level of conversations on ACOR is unmatched. The depth of the scientific explanation is just far superior than what you see on the plethora of web-based systems where everybody has a similar avatar (just with different colors). ACOR participants are not avatars. They are real human beings with names. Let me give you an example:
I do want to mention that, in the off chance the tumor growth is relatively slow, MSK has a new trial open for solid tumor patients, including BT patients. The study head IS a BT researcher. His email is email@example.com. The study combines perifosine and temsirolimus. I know the BT team is very excited about the study. This combination was highly effective in the MSK mouse models for medullo and GBMs.
The study is only in NYC at Memorial Sloan Kettering, and I imagine this might be tough to do for you with 5 children, but when I read about the results in the young man in the SHH study, you never know what might work, and I thought you should at least know about it. I do know that one of the reasons tumors are not killed by radiation is that akt is unregulated, and one of the drugs in this specifically downregulates akt…
Perifosine alone has been disease stabilizing in nb, but not in medullo. For medullo, hopefully the combination will be effective, but we do not know. Here is the study link:
Gilles says: Not exactly the kind of conversation you would expect between patients or regular parents. But these are not regular people!
Matthew says: But is there nothing to be gained from some of the ratings, commenting, tagging et al that those newer Health 2.0 sites provide?
Gilles says: And of course there is MUCH to be gained from analyzing what people do and how they connect to others. Anyway, much work needs to be done about how reputations get built in online communities. And how significant the reputation is. In fact much more important than in the rarefied world of peer-reviewed publications.
Matthew says: So can ACOR stay as an email list-serv only?
Gilles says: ACOR could remain an email listserv only service for a while but eventually would lose its membership as new members will certainly expect more. I am not planning at all to see this situation happen. We will work to integrate many additional services within the communities and to build a highly flexible bridge between listservs and web interfaces and advanced Health 2.0 services. I am actively working on some of these. Many interesting solutions coming from various directions, including many companies who are pure online software companies
Matthew says: That sounds very exciting. What about surfacing all that incredible information from the last 15 years on ACOR?
Gilles says: I believe that 2010 will be the year of social structured data. Surfacing old conversations from the ACOR archives could easily be a life saver. So this is a priority. The situation of ACOR is found across the Internet. We are part of the deep web, often considered to be at least 50 times bigger than what is searchable. Finding solutions to surface some of these hidden conversations could change the equation. Just imagine what a change it will be when someone just diagnosed with a rare condition can find in a few clicks a community of people who can provide life-saving info almost on the spot!
Matthew says: So what are your plans for that?
Gilles says: I am working on it:-) I promise that The Health Care Blog will be the first place where I will announce that we have found a solution to some of the very vexing problems that make this surfacing a non-trivial issue.
Matthew says: OK! Of course part of the reason we’re IM-chatting tonight is because you’ll be at Health 2.0 Europe in Paris on April 6-7. As (like me) you’re an immigrant to the US with deep European connections, what do you know about the state of patient communities in Europe? For that matter, are there lots of Europeans on ACOR now?
Gilles says: My fund raising call in December resulted in contributions from 14 countries! More than half in Europe. So it is clear that Europeans are members of the communities and derive similar benefits than their American counterparts. But this is VERY different from the situation I saw just a few years back. I tried to build ACOR-Europe in 2003-2004. It didn’t succeed. In fact it was a painful failure. People were not ready for the idea that informed patients are a good thing in the medical ecosystem. When I say people, I include the patients: we had one French group who left ACOR after telling me I was nuts to believe that patients can understand anything about medicine.
Matthew says: I understand that knowledge can flow across borders, but often treatment patterns vary between countries (as they do within the US). In the US when you find that your local oncologist has got it wrong, you can often take your insurance elsewhere (although we know there are huge problems). What do you find the situation is for European ACOR members?
Gilles says: 6 years later, people in Europe are thirsty for medical information. In reality, treatments for cancer are not that varied across borders. They can be delayed here and there. In fact they usually are accepted first in the US and then soon after in Europe. Of course the UK is a story apart (surprise!). With NICE in charge of doing the comparative effectiveness studies, harsh decisions are made, often hard to understand by the individual patient
Matthew says: So, hypothetically, you might be in Munich and find out about a better treatment option in Hamburg?
Gilles says: Maybe not Munich/Hamburg. But certainly if you are in the center of France your doctor may not know about everything taking place in the specialized oncology centers in Paris. And if you are in France you probably don;t know that the UK has this very old history of excellence in research about leukemia. So, in a sense, the work we have done at ACOR, helping people find the real specialists for their rare cancers could easily be reproduced now across Europe. And that’s why we are working on creating social structured data tools to build accurate doctors directories for rare conditions. Once we have the right methodology for doing this across the US, it will be trivial to replicate across Europe
Matthew says: Do you expect to be surprised by anything you see at Health 2.0 in Europe from Europe, or do you think that this is mostly Europeans copying an American phenomenon?
Gilles says: I HOPE to be surprised. I never expect Europeans to just copy. European cultural diversity forces big changes. It’s very often infuriating but it is very interesting. And the common market is just producing some incredible opportunities. Thinking of the choices that will be facing informed patients in that continent provides a fantastic opportunity. Having the mobility and the ability to chose your place of treatment how do you find the best place that fits your profile? Complex question. Will people buy drugs in this or that country if the costs are different? I expect many offerings in the Health 2.0 ecosystem to help Europeans make better medical choices. I am quite sure we will see the beginning of these at the Health 2.0 Europe conference in Paris
Matthew says: Wonderful answer, that you end with a question!
Gilles says: Jews always answer questions with another question, right?
Matthew says: You can say that. I can’t! Ha ha. Gilles, thanks very much for your time and for the great work you do. We look forward to seeing you in Paris.