• by Fard Johnmar , Op-Ed Contributor, December 20, 2013

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 to recently 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.”

Patients Suggest Ways for Pharmaceutical Companies and Others to Involve Them in Research 

In addition to providing their opinion on whether the medical establishment should encourage patient-informed research, health activists offered a number of suggestions about how consumers could inform the drug development process. In fact, health marketers could be in an ideal position to make some of these recommendations a reality. These include: 

• Working with patients to “crowd source” trial design so that it “aligns with the community’s ability and desires” 

• Developing and moderating “live trial ‘Q&A’ boards” where trial participants could ask questions of sponsors, share their own data and more

There are other ways for health marketers to help patients fighting against elegant science, including: 

• Raising awareness about specific diseases and creating avenues for patients to collect their own data and recruit scientists to assist their efforts 

• Conducting outreach on behalf of patient-scientist teams producing clinical research that would generally be ignored or dismissed by the mainstream media and medical establishment 

Yet, the question remains: should health marketers help accelerate the Accelerated Trial-Sourcing movement by aiding patient-led research efforts or involving them in the drug development process? Can the legal, regulatory, quality and safety issues associated with patient-led or informed research be successfully overcome? These are questions that will take some time to answer, but I’m hoping that marketers working in the clinical research and recruitment area will provide their perspective on this issue. 

The bottom line is this: patient-initiated and informed research is a trend that’s not going away. Health marketers working with pharmaceutical companies, research organizations and other groups will need to decide how to respond.