February 24, 2024

In 1988, students arriving for their first day of classes at Harvard Medical School were surprised when they were greeted by a group of AIDS protesters who poured fake blood on the sidewalk and held up signs advocating against what they called “elegant science.”

These AIDS advocates, along with others around the country, were angry that the medical establishment seemed to be more concerned with practicing “elegant science” than quickly developing safe and effective treatments for HIV. “Elegant science,” which was highlighted in Steven Epstein’s book, Impure Science: AIDS, Activism and the Politics of Knowledge, refers to a belief that medical research should be practiced slowly, carefully and far away from the demands and notice of patients and those who care for them.

Nearly 25 years later, the fight against “elegant science” continues today. But rather than staging protests, handing out flyers and storming pharmaceutical companies and the Food and Drug Administration, patients are taking matters into their own hands by using digital tools to initiate, fund and even conduct medical research. In our new book, my co-author and I refer to this emerging trend as “Accelerated-Trial Sourcing.”

One example of how Accelerated Trial-Sourcing has taken shape is in the area of amyotrophic lateral sclerosis (ALS), or Lou Gehrig’s disease. There is no cure for ALS, and current treatments are – at best – only modestly effective. Frustrated with the slow progress of research on a potentially beneficial drug with the active ingredient of sodium chlorite, a group of ALS patients decided to conduct their own clinical trial of the compound using social networks and other digital tools. While patients conducting the trial suggested that sodium chlorite was effective, an analysis conducted by PatientsLikeMe, a patient-powered research platform, found it was harmful.

Despite the many issues associated with patient-initiated clinical trials, some consumers believe pharmaceutical companies, the FDA and medical researchers should encourage greater consumer involvement in research. According torecently published research, nearly 90% of health activists (or patient opinion leaders) said patients “should play a more active role in medical research.” In addition, 94% said that pharmaceutical companies should “actively collaborate with patient researchers.”