Newton’s Heywoods, the family that developed its own ALS research incubator in response to a brother’s struggle with the illness, makes the news once again. A story in the NYTimes about online patient communities features “PatientsLikeMe,” a support site that also collects data for research.
PatientsLikeMe has an innovative for-profit business model, too. It sells health data, gathered from member profiles but with certain identifying information removed, to drug makers and others for scientific and marketing research.
Jamie Heywood, the company’s chairman, says both patients and drug makers delve into that data to meet their own needs.
Members can seek out patients of the same age, sex, and disease progression, whose profiles are displayed on the site, to see which drugs or doses worked for them. Drug makers can pinpoint subgroups — say, severely depressed middle-aged men — who reported the greatest improvement on a particular medication.
These sites also have a down side, according to the story.
Some people share their health information for the sake of the greater good. Yet they typically have no way of knowing whether their health profiles contribute directly to the development of more effective treatments — or are simply mined to create more effective drug marketing.
“Do we need to protect people who have illnesses from being exploited?” says Cathy Dwyer, an associate professor at Pace University who has studied how advertisers market to consumers based on their online behavior. As the story points out, some sites are run by drug makers with no-so-hidden agendas.
For more on this topic, see Partner’s Center for Connected Health. Also check out the James Heywood’s link on on Patientslikeme.com for links to stories, books and movies about the Heywood family’s efforts. We took note when the much covered stories. We took note when they turned up in the The New Yorker in 2000.