Patient 2.0 empowers patients, worries doctors

Andrew Van Dam

About Andrew Van Dam

Andrew Van Dam of The Wall Street Journal previously worked at the AHCJ offices while earning his master’s degree at the Missouri School of Journalism.

Writing for Time, Bonnie Rochman digs into the ramifications of patients sharing information and tips online, an “empowerment movement” she calls “Patient 2.0.” In the piece, she profiles the newly created Society for Participatory Medicine, which “encourages patients to learn as much as they can about their health and also helps doctors support patients on this data-intensive quest,” as well as PatientsLikeMe.com, a free service which makes its money by selling anonymized patient information.

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Photo by presta via Flickr.

One private-sector initiative already has about 50,000 patients inputting their symptoms and treatment regimens and updating details of their disease progression. Wonder how others are coping with your particular ailment? PatientsLikeMe.com spells it out via color-coded charts and graphs. “When you need help, privacy is a terrible thing,” says Jamie Heywood, who co-founded PatientsLikeMe in 2004 before his brother died of Lou Gehrig’s disease, or ALS.

Rochman demonstrated the strength of PatientsLikeMe in an anecdote in which data from the site’s users allowed administrators to reach clear conclusions about the effectiveness of lithium in the treatment of ALS six months ahead the formal clinical trials that were testing the same thing.

While medical professionals like those at the Society for Participatory Medicine have embraced the patient power movement, “plenty of doctors are worried about the quality of the information that is being assessed as well as patients’ ability to understand it,” Rochman wrote. A few have taken it upon themselves to fill the gaps, banding together to weigh in on the effectiveness of certain off-label treatments via Twitter, and to produce patient seminars on the reasons for clinical trials and the efficacy of various treatments.

NCHS: Patient 2.0 most popular use of health tech by far

The National Center for Health Statistics recently (Feb. 2) released statistics for the first half of 2009 on “Health Information Technology Use Among Men and Women Aged 18-64.” The stats show that “searching for health information online” is still the only use of health information technology embraced by a majority of American adults.

The numbers:

  • From January through June 2009, 51% of adults aged 18-64 had used the Internet to look up health information during the past 12 months.
  • Over 3% of adults aged 18-64 had used an online chat group to learn about health topics in the past 12 months.
  • Among adults aged 18-64, women were more likely than men to look up health information on the Internet (58.0% versus 43.4%) and were also more likely to use online chat groups to learn about health topics (4.1% versus 2.5%).
  • From January through June 2009, almost 5% of adults aged 18-64 had communicated with a health care provider by e-mail in the past 12 months.
  • During the first 6 months of 2009, 6% of adults aged 18-64 requested a refill of a prescription on the Internet, and almost 3% had made an appointment with a health care provider in the past 12 months using the Internet.
  • Among adults aged 18¬64, women were more likely than men to request a prescription refill on the Internet (6.6% versus 5.3%), make an appointment using the Internet (3.5% versus 1.8%), and communicate with a health care provider over e-mail (5.6% versus 4.2%).

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