Monday, February 24, 2014

Beyond Social: From Connecting People to Connecting Knowledge

Today's guest post comes from Rahlyn Gossen.  She is the founder of Rebar Interactive, a clinical trial patient recruitment and digital marketing company. Rahlyn also maintains a blog, newsletter, and Twitter profile focusing on digital strategy for clinical trials.

SmartPatients, according to the website headline, is "an online community where cancer patients and caregivers learn from each other about treatments, clinical trials, the latest science, and how it all fits into the context of their experience."

This headline doesn’t communicate the full potential of SmartPatients.

The same description could be used to describe a forum or listserv, both aging but useful web technologies that have long facilitated active online communities. People tend to forget that the Internet was social long before the rise of what people call "social media." Very active communities have existed around various niche topics, including health topics, for decades.

SmartPatients, which uses modern Web technologies, is about more than community. It’s most exciting potential is in efficient knowledge creation.

Think for a moment about review websites like Yelp. At one time the only people who wrote restaurant reviews were professionals. Those professionals still exist, but restaurant reviews have since been democratized. And with that democratization, the experiences of many individuals have been pooled together to create new knowledge (crowdsourcing).

Now imagine a similar approach being used for particular health conditions or clinical trials. What might happen when everyone, not just health professionals, could participate in knowledge creation? That’s the most interesting and exciting potential of websites like SmartPatients.

But we’re not talking about restaurants. We’re talking about something with much higher stakes. If I get bad advice on Yelp, the worst that might happen is I waste money on a meal I don’t enjoy. If I get bad health advice, the consequences could be much more severe. Of course, this observation obscures the possibility that people get bad health advice under the status quo. Oftentimes, they do.

Regardless, transitioning from a more authoritarian to democratic form of healthcare is difficult. Given the backgrounds of the duo behind SmartPatients, they might just be up to the myriad challenges.

Gilles Frydman founded the Association of Cancer Online Resources (ACOR) in 1995, shortly after his wife was diagnosed with breast cancer. Gilles has continued to grow ACOR over the years, and the website currently boasts 142 individual cancer communities. ACOR, which is built with listservs, is a great example of the longtime health-focused social communities I alluded to earlier. SmartPatients, it would seem, is the natural evolution of ACOR.

Roni Zeiger, MD is the other member of the SmartPatients duo. Dr. Zeiger is the former Chief Health Strategist at Google and a part-time practicing urgent care physician. Dr. Zeiger will be involved in two back-to-back sessions during the 23rd annual Partnerships in Clinical Trials taking place March 30-April 2, 2014 in Las Vegas.

The first of these sessions is titled “Patient Centricity and Data Converge: How the Next Generation of Social Medicine Impacts Clinical Trials.” In this keynote, Dr. Zeiger will talk about how you can tap into the insights, data, and motivation of the growing numbers of patients in online communities.

During the following session, titled “Partnering Patients: What Do You Need From Each Other,” Dr. Zeiger will lead a panel. The panel will consist of patients and pharmaceutical executives, who will discuss what they need from each other to push the clinical trial industry forward. The panelists include:
  • Jeff Kasher, PhD, VP, Clinical Innovation and Implementation, Eli Lilly
  • Jack Whelan, Cancer Warrior & Survivor, ePatient, Clinical Trial Participant
  • Lane Raspberry, Clinical Trial Participant, Open Data Advocate, Wikipedian
  • Steven Mikita, Assistant Attorney General, Utah; Board of Directors, Spinal Muscular Atrophy Foundation, Patient Representative, CTTI
  • Jeremy Gilbert, Vice President, Product + Strategy; PatientsLikeMe
Depending on your role in clinical research, these sessions may not be directly relevant to your current work. But no matter who you are, these sessions will be relevant to your future work. At this point, it's very hard for me to imagine a clinical trial future that doesn't heavily rely on knowledge creation through networks. Given Dr. Zeiger's expertise in this area, we can all benefit from his input.

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