I recently had an interesting conversation with Wendy Lee (@thewendylee) from the SF Chronicle about patients with rare diseases connecting over social media, in particular Facebook. In her article “Facebook is a friend to those suffering rare maladies“, Wendy Lee explores the new role Facebook plays in helping patients with rare diseases tackle challenges such as isolation, finding and connecting with other patients, and learning more about their disease.
The article also mentions important emerging questions around patient privacy and the challenges for the pharmaceutical industry and researchers that need to navigate FDA and IRB (Institutional Review Board) regulations and reviews when interacting with patients on Facebook and other social media platforms.
The problem is that clinical research is very regulated, for good reasons. It does not lend itself well to the extremely dynamic and conversational nature of social media. Akin to more traditional research outreach materials, review is required for any advertising that is intended to be seen or heard by prospective research participants. In the context of Facebook, this means that researchers need to get approval for every Facebook post (see also FDA draft guidances, Jan 2015).
But the article also shares this heartening example of a research team that was able to boost its research participant recruitment efforts using Facebook:
Dr. Irene Ghobrial of the Dana-Farber Cancer Institute in Boston has recruited 200 patients, including those with an early precursor to multiple myeloma, to participate in a clinical trial after mentioning the test on Twitter and Facebook.
“Patients are very interested to know what’s going on, and this should be one of the ways we should communicate with our patients,” said Ghobrial. She hopes to soon expand the trial to 10,000 patients.
In the same spirit, a study team at Mayo Clinic published an interesting patient-initiated research approach through social media (view video below). Here, patients became the drivers. They contacted the researchers to encourage them to study their disease and potential treatment options. Within one week, the research team at Mayo Clinic had recruited 12 study participants for a spontaneous coronary artery dissection (SCAD) pilot study.
Facebook CEO Mark Zuckerberg believes that his social network and its groups could help solve the clinical-trial problem, according to Wendy Lee. (Note: Nearly 80% of clinical trials fail because the research teams cannot recruit the required number of participants.)
“In a Q&A in Menlo Park this month, he talked about Facebook groups for rare diseases establishing guidelines that state, “If a company designs a drug, everyone who is part of this group is signed up to be a part of the trial,” he said.
This is both an interesting and challenging development. If IRBs and the FDA find ways to adjust their traditional regulatory frameworks to accommodate the difference between social media and traditional forms of participant recruitment while protecting patient privacy, the research community may have a chance to address the clinical research recruitment challenge using social media and to bring research into the digital and social media age. Examples include the difficulty of conversing in a manner social media users expect; more flexible regulatory approval processes; guidelines for how information from social media can be gathered, retained, and stored; access or privacy settings of social media pages; and the use of pre-screening forms.
The bottom line is that researchers and companies need to engage with their audiences on their terms.