L-Soft Interviews Gilles Frydman, President of ACOR.
Q: When and why did ACOR get started?
A: ACOR was started in two phases. First, in September 1995, we created medinfo.org, designed as archives of the existing and new cancer email lists. This came after a family member was diagnosed with breast cancer in June 1995. Within a few hours after the original diagnosis, I joined the breast cancer list, which was at the time one of three or four existing cancer-related lists each coming from a different academic institution. Within a few hours after joining this group, I had enough information to know that in all probability the original diagnosis was incorrect and that the brutal treatment that had been presented as the necessary solution was in fact no longer the treatment of choice for that particular cancer. Thanks to the list we immediately asked for a second opinion and avoided the long term side-effects of a treatment that would have been substandard.
I kept on reading the list and then joined the other three cancer lists. I soon realized that archiving for those lists was nonexistent, and I felt that the conversations taking place were so good it was criminal to just let them disappear in a black hole in cyberspace. So, in September 1995 we first created software to help archive and search the content of those lists, from a central location. Within two months of its birth, Medinfo began archiving seven new cancer lists and it became clear that all these early users of the Net were well-educated patients and caregivers, able to conduct high-level conversations about complex diseases, complex treatment options and complex quality-of-life issues. And so it was only natural that in the second step we would try to federate all those disparate entities into a new sort of online co-operative and create new lists for every type of cancer.
In summary, ACOR was born in 1996 out of the simple idea that informed patients suffering from complex and often rare diseases can find all available treatments for their condition and receive better care. Eric Thomas, L-Soft founder and CEO, understood our concept and very generously donated to ACOR one of the first ListPlex email list hosting nodes. Since then close to 200,000 people have subscribed to one or more lists.
Q: How many lists do you have and how much traffic do you see on an average day?
A: We have close to 150 public and about 50 private lists. We plan to create many more lists in the coming year. ACOR delivers an average of 200,000 individual emails/day.
Q: Which list has the most subscribers?
A: The largest list is the CLL (Chronic Lymphocytic Leukemia List) with about 2,400 subscribers. This simple number doesn't have much significance unless you know that CLL is a fairly rare disease, with an incidence of 8,100 to 12,500 new cases in the United States per year. It is fair to assume that the ACOR CLL list serves a significant percentage of newly diagnosed people in the United States.
What has been said about the CLL list can be repeated for at least 30 other ACOR lists, focused on cancers with an incidence below 25,000 new cases/year.
Q: To what do you attribute the success that ACOR is today?
A: The success is due to a variety of factors. The organization doesn't force a single model to be applied to all lists. On the contrary, we use the great flexibility offered by LISTSERV to build different types of communities for different results. For example, we have private groups created to help specialized doctors discuss difficult cases with other specialists located around the globe. We have semi-private lists designed to help people who are suffering from widely metastatic cancers discuss freely and in a supportive environment the issues associated with end-of-life and death. And of course we have many open lists to help patients and caregivers become informed about a condition and discuss all available treatment options.
When asked about the benefits of the lists, patients and caregivers alike report that their participation in the ACOR specialized health eCommunities has helped them become empowered by:
- Gaining access to genuine medical professional information related to all aspects of the disease.
- Learning about links related to other important articles given by some members of the eCommunity.
- Sharing with others who are experiencing similar effects of treatments. This is particularly true when people experience unusual side effects since many oncologists do not seem to be aware of their severity and of their impact on patients' quality of life.
We can probably summarize the supportive impact of the lists in this remarkably simple sentence: "You are not alone!" New subscribers consistently learn that they are not alone – they meet others just like themselves and because they have a cohesive group identity that allows them to speak up for themselves and to advocate for better care and treatment.
Q: Do you have any specific stories about people who have been helped by the ACOR lists?
A: We have literally hundreds of stories of people whose lives have been helped or even saved by their participation to one of the ACOR lists. A few examples may help understand how a ubiquitous technology with a simple user interface can profoundly transform the life of so many!
I can mention the L-T-SURVIVORS list (the LTS list), a list dedicated to the medical and quality-of-life issues related to the long-term effects of cancer treatments. This is typically a medical story that is entirely under the radar with very few oncologists even aware of the long term implications of each type of cancer treatment. A few members of the LTS list are alive today after they had contacted their GP and were told to relax. The list owner, on the other hand, recognized the symptoms of a life-threatening cardiac condition in emails sent by those list members and told them to rush to the emergency room to get immediate attention.
Hundreds of people have joined the L-M-SARCOMA list (The LMS list for Leiomyosarcoma, a rare cancer). A significant percentage of those joining the LMS list were in fact mis-diagnosed and had a very short life expectancy. Thanks to remarkably well informed list members, starting in 2001 every person carrying a specific mutation was recognized on the list and told to demand that their doctors conduct a new test to verify that they carry the mutation. Many of those who were informed of this test are still alive today due to the existence of a targeted therapy specific to this mutation. In fact there is now a very active ACOR list for those suffering from GastroIntestinal Stromal Tumor (GIST), the proper diagnosis for those carrying the mutation.
When asked about the personal impact of participating in BMT-TALK, a list discussing bone marrow transplantation, a member responded:
"I joined bmt-talk two years AFTER my second transplant for relapsed Hodgkin's. Until I joined this list, I knew of only two people who had survived their transplants. So many had died (reason being my hospital did auto transplants, mainly for breast cancer patients, and at the time, there wasn't much hope for young women with breast cancer) and I felt very alone.
To find out there are so many other people in similar situations totally changed my feelings about what I was dealing with, emotionally and physically. This changed my life, completely. I have been on bmt-talk since then, and even now, 11 1/2 years post-transplant, I still don't know what I would do without bmt-talk."
Q: What can people do to help ACOR and its mission?
A: They can definitely help any cancer patient or caregiver to know of the free resources we provide. We could provide the same level of service to many more people without creating a negative impact on our system.
They can help ACOR by donating money, software or equipment or by making educational grants. Individuals, foundations and corporations such as L-Soft International, Sun Microsystems, Anysystem.com, Berlex Laboratories and Genentech have helped ACOR to grow from a small grassroots system to a large integrated system designed to empower patients and caregivers alike.
Q: What advice can you give those who want to create a resource like ACOR?
A: Work from the beginning with dedicated people who understand that patient empowerment can only happen when you allow the free flow of quality information, regardless of political, religious or professional affiliations. This is why religious and political posts are specifically not what we like to see on any of the ACOR lists.
Q: What are your plans for the future of ACOR?
A: There are thousands of Health eCommunities across the Internet dealing with thousands of medical conditions. We know the value of well managed communities. But there is a great lack of valid scientific data to assess the real impact of those communities. Thanks to a grant from the Robert Wood Johnson Foundation Health eTechnology Initiative (www.hetinitiative.org) we are conducting, with a team of exceptional researchers at the UNC School of Public Health, the largest scientific study ever conducted on medical mailing lists. You can read about it at www.acor.org. In order to conduct the research we have built a HIPAA-compliant survey system that is fully integrated with the mailing list system. We plan to use this system to conduct long-term research on a regular basis.
For the future we plan keeping on building more and more specialized mailing lists, and we plan to build a pilot program to see if our model applies to other areas of medicine.
Gilles Frydman is the President of ACOR.