Online patient groups -- which over the last decade have become an "increasingly powerful" source of information for patients and funds raised for medical research -- are "becoming invaluable partners to researchers and physicians searching for cures," the Wall Street Journal reports. Tens of thousands of online patient groups exist on Web sites such as Yahoo! and more specialized sites, and about 17 million adults in 2006 participated in online discussions about personal issues or health problems, according to the Pew Internet & American Life Project Center.
Online patient groups have increased their participation in medical and public health research, as well as collaborative efforts with researchers, scientists and prescription drug developers. In addition, online patient groups have increased their participation in studies to evaluate the effect of patient Web sites and "are even conducting their own studies on the side effects of medications, and working with researchers to recruit clinical-trial participants, provide DNA samples and start tissue banks," the Journal reports. A group of researchers with expertise in online patient groups recently launched a new Web site and blog, e-patients, to expand collaboration between patients and researchers.
Joyce Niblack, who operates a Web site for the Association of Cancer Online Resources that offers access to 159 mailing lists for cancer and other diseases, said, "We can bring information about studies, clinical trials and meetings to any patient worldwide who has computer access." George Demetri, head of sarcoma and bone cancer research at the Dana Farber Cancer Institute, said that researchers should collaborate with online patient groups. However, Demetri said that the challenge in cancer research is "keeping the patient voice in but also staying as rigorous as possible and not being swayed by inaccurate, premature or misleading data" (Landro, Wall Street Journal, 6/13).
"Reprinted with permission from kaisernetwork. You can view the entire Kaiser Daily Health Policy Report, search the archives, or sign up for email delivery at kaisernetwork/dailyreports/healthpolicy. The Kaiser Daily Health Policy Report is published for kaisernetwork, a free service of The Henry J. Kaiser Family Foundation . © 2005 Advisory Board Company and Kaiser Family Foundation. All rights reserved.