Patients Push Pace of Medical Research

Last month I wrote about how patients-or rather consumers-were taking on greater responsibility for decisions affecting their own health, largely because of the Internet and the ability to research and form opinions about individual treatments. That was only scratching the surface of how the Internet is revolutionizing health care.

A Web site called PatientsLikeMe (www.patientslikeme.com), based in Cambridge, Mass, allows patients to create and share data on what treatments work, with the potential of dramatically altering not only patient care but also medical research. Some 7000 patients have joined the Web site since its launch in 2004. The site began with the single case of Stephen Heywood, who had amyotrophic lateral sclerosis (ALS), and was started by Heywood's 2 brothers: James, now chairman, and Ben Heywood, now president of the privately funded company (Stephen died in 2006). The site has been expanded to include multiple sclerosis (MS), Parkinson disease, HIV/AIDS and, most recently, mood disorders. The founders' stated goal: speeding up the pace of research.

PatientsLikeMe goes beyond the health information and online community features provided by many Web sites. Patients quantify their symptoms and treatments and provide periodic updates. The site aggregates and formats the data into charts and graphs. Forums are also available where members share advice and feedback on specific medications or issues.

A profile of PatientsLikeMe titled "Practicing Patients" was featured in a March 23 article in the New York Times Magazine. The article by Thomas Goetz begins by describing the experience of a man with MS who was taking 10 mg of baclofen (along with Provigil and Tysabri) and had difficulty walking. Although his neurologist told him that 10 mg was the maximum safe daily dose of the muscle relaxant, the man was able to view a bar graph displaying the range of dosages that some 200 other patient-members with MS were taking and learned that 10 mg was at the low end of the scale. The man asked his neurologist to increase his baclofen dose and now takes 40 mg/d and is now able to walk without feeling like he is sinking in quicksand.

After researchers in Italy found that taking lithium seemed to slow the progression of ALS significantly, many members with ALS began taking lithium, forming an ad hoc clinical trial. These members are now tracking their progress on the Web site. James Heywood suggests that this coming together of patients might complement larger-scale research and hint at answers to research questions sooner.

"We must consider the consequences of waiting for more information," says Heywood, writing in a blog on the PatientsLikeMe Web site. "The reality is that the traditional medical research system will not provide any better data to patients for at least 2 years and that is being optimistic."

These 7000 patient-members who have opted to share their information with others like themselves and with researchers may be the vanguard of how we all will care for and treat our resume of chronic diseases. Rather than wait for advice from a physician, these patients are co-practitioners treating their conditions and guiding their care. Observes Goetz: "It's an experiment in the future of medicine, running in real time."

An article posted on August 20, 2007, on CNNMoney.com describes PatientsLikeMe as "a game-changing start-up" that will upend 2 existing industries: health care and medical research, and it includes the Web site in its list of 15 companies "that will change the world." Medical researchers and others will soon face a choice: support such patient-driven efforts to reform aspects of health care-or prepare to be upended.