Online discussion lists generate huge followings among healthcare-hungry Web users but providers aren't tapping into their full potential. Chances are there's an online mailing list that supports every medical condition or disease a doctor can diagnose, regardless of how rare it is. What many of those discussions lack, however, is medical input and credibility. For hospitals, the online informational opportunities that exist with e-lists are limitless, particularly for market research projects, clinical trial recruitment and direct marketing efforts.
Often what keeps healthcare organizations with limited resources from forging into this online territory are the maintenance demands of keeping the lists updated with current, accurate information. If this is your concern, partnering with an established, credible patient-focused organization is an ideal way to reach a captive healthcare audience hungry for the latest medical information in a specific area like cancer, diabetes and nutrition. Web sites like http://www.liszt.com map out the landscape of online mailing lists by healthcare category and Lsoft, the company best known for its trademarked listserv software, features a list of its healthcare clients on its site (http://www.lsoft.com).
One Lsoft pro bono client, ACOR, (Association of Cancer Online Resources) serves as a good example of the partnering opportunities that exist with cancer-focused electronic lists. Founded by Gilles Frydman in 1995, this nonprofit organization (http://www.acor.org) is a one-stop mailing list resource for various kinds of cancer, particularly for rare forms. ACOR monitors and maintains at least 70 mailing lists. Its focus is on disseminating the latest accurate information on cancer. To this end, some 100 volunteers monitor the list to ensure that bogus information on "cures" or misleading messages about cancer treatments are not posted to its 36,000 subscribers.
These measures, which emphasize the need for scientific data about new treatments, are always challenged, says Friedman.
In 1996, the year Friedman refers to as the "wild, wild west," companies that were touting natural products as "miracle cures" for various forms of cancer became angry when they were denied access to ACOR's discussion lists to promote their own agenda.
As a result of its stand, ACOR emerged as a respected, quality-based resource for the cancer community. Recently, the Federal Trade Commission invited ACOR to speak about its efforts to maintain quality health information as part of the FTC's "Operation Cure.All" to prevent false health claims on the Internet. In addition, the National Cancer Institute's Office of Liaison Activities (OLA) recently listed ACOR as an advocacy resource. This outreach arm of NCI collaborates with several cancer advocacy and voluntary organizations to disseminate the latest scientific information on cancer.
ACOR, which works with at least 200 healthcare professionals, is looking to expand its relationship with hospitals and physicians. The informational opportunities include:
- Updating ACOR's members on clinical trial opportunities. (One of the key areas NCI is looking to strengthen its relationship with ACOR.)
- Providing cancer information in other languages like Spanish, Portuguese and French.
- Providing lifestyle support for cancer survivors. Soon ACOR will develop online mailing lists that address sexuality and fatigue issues.
ACOR also is looking to partner with a healthcare PR firm that can donate communications support for its initiatives. Although ACOR has attracted 36,000 subscribers, it has never spent money on advertising or promoting its services. Still, it has managed to land some high-profile ink in newspapers like the Wall Street Journal, the Boston Globe and Miami Herald, says Friedman.
The visibility ACOR has earned speaks to the critical need for support and credible information cancer survivors rely on via online mailing lists, says Frydman.
(ACOR, Gilles Frydman, 212/226-5525; Lsoft, Gabriella Laneres, 301/731-1990)