A conversation with Gilles Frydman, founder of the Association of Online Cancer Resources, about how this venerable and vibrant online community has helped more than 600,000 cancer sufferers and caregivers for over 13 years!
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The Association of Cancer Online Resources, Inc. (ACOR) is a 501 (c) (3) non-profit organization, incorporated in New York State. ACOR is one of the original social networks, created long before the term became one of the buzzwords of the web 2.0 explosion of services. Since September 1995 ACOR users interested in specific and often rare form of cancers have benefited from the collective intelligence of hundreds of patients and caregivers.
The heart of ACOR is a large collection of cancer-related Internet mailing lists, which delivered over 1,5 million e-mail messages last week to subscribers across the globe.
In addition to supporting the mailing lists, ACOR develops and hosts state-of-the-art Internet-based knowledge systems that allow the public to find and use credible information relevant to their illness.
There are over 150 mailing lists focused on specific cancer issues such as Childhood Acute Lymphoblastic Leukemia, Current Research on Angiogenesis, The Kidney Cancer Online Support Group, etc.
ACOR aims to:
Provide information and support to cancer patients and those who care for them through the creation and maintenance of cancer-related Internet mailing lists and Web-based resources
Provide subscribers with access to varied and credible information sources through Internet resource development and partnership with trusted content providers
Improve communication between patients and health care professionals through advocacy in a variety of public forums, including the media and professional journals
Sounds like a community that pharmaceutical companies might like to join. Sorry, but pharma marketers are not welcome, at least not without obeying the rules established by this ePatient community.
Questions/Topics To Be Discussed
Tell us about ACOR, including why you created it?
What are listservs? Why haven't you adopted some of the newer Web 2.0 tools?
How have ACOR patient communities interacted with pharmaceutical companies in the past and how do you see working with them in the future?
What can pharmaceutical researchers and marketers learn from ePatients? Anything?
What are some of you criticisms of the "new" social media fad?
What future plans to you have that nay be of interest to pharma marketers?
In 1995, soon after Gilles' wife, Monica, discovered that she had breast cancer, Gilles created ACOR, the Association of Online Cancer Resources, and the world of Internet resources for cancer patients has never quite been the same since. ACOR's 159 listservs deliver over 1.5 million email messages per week. With a current membershp of over 50,000 people and a total membership of over 600,000 ACOR has changed the quality of care received by many patients suffering from unusual cancers. Gilles is one of the original members of the e-patients scholars group and a mainstay behind the new Society for Participatory Medicine and its Journal of Participatory Medicine. Gilles is a frequent presenter about the impact of the connected empowered patients on the quality of care they and other receive and on the healthcare delivery system in general.