With its recent IPO, Facebook has received a lot of media attention lately. While the news has been mostly financial, the huge sums of money being discussed are not the only numbers that can give pause. Facebook boasts a staggering 900,000,000+ users. To put that in perspective, if Facebook were a country, it would be the 3rd largest in the world. And while Facebook is the biggest, it’s not the only social networking giant. Depending what source you consult and how you count, there’s another dozen or so social media sites with 100,000,000 or more active users. It’s hard to believe that, as little as seven years ago, Facebook was still in its infancy, unavailable to the general public, and many of the other popular sites didn’t yet exist. Journalist Tom Friedman humorously observed that, “way back then”, Twitter was just a sound, the Cloud was something in the sky, applications were something you sent to college, and Skype was a typo.
It’s barely possible to exaggerate the extent to which the internet has influenced every aspect of our world, so, of course, healthcare is no exception. For example, the FDA recently announced that it is considering expanding the definition of nonprescription drugs, in part because of the wealth of health-related resources available on the internet. Janet Woodcock of the FDA said, “The rules for nonprescription status were established in an age when widespread access to information technology did not exist. The world is evolving.”
Internet sites on which users actively engage each other directly, known collectively as social networking, amplify the role the internet has played in both improving the health of individuals and advancing the healthcare industry. What may have started as two early chat room denizens debating over dial-up the curative powers of chicken soup has evolved into myriad online communities that have become invaluable to patients, care-givers, suppliers, researchers, and policy makers.
In 2000, the National Institute of Health launched ClinicalTrials.gov to improve public access to clinical trials. Anyone suffering from a particular disease or condition can use this site to find clinical trials in which he or she can participate. Patients also have access to a number of commercial sites to learn about trials planned in their area. Clintrialsforyou.com is such a site; funded by sponsors, investigators, CROs, and SMOs, it provides free clinical trial information to prospective subjects. These websites help reduce the high cost and long lead time associated with clinical trial recruitment while enabling individuals to seek experimental treatment for their conditions.
There’s no doubt that sites such as these provide considerable value to their subscribers. While not social networking sites per se, they do connect patients with researchers, who can then interact with each other, albeit outside the purview of the website. Adding social networking to the mix only adds to the empowerment, influence, and advocacy the general internet offers patients. Meanwhile health science organizations benefit from a fortunate byproduct of all that discussion: vast pools of patient-related, condition-specific data.
Disaboom.com is a social networking site for those living with disabilities. Like Clintrialsforyou.com, it includes clinical trial information. But Disaboom.com members can use the resources available on the site and engage in discussions with each other about a much broader array of topics, including treatments, assistive technologies, pain management, accessible travel, adaptive sports, scholarship opportunities, emergency preparedness, support organizations, fundraising efforts, job advocacy services, and the rights of the disabled.
Rareconnect.org hosts 24 online communities for patients with rare diseases. Twenty years ago, these individuals were…well…individuals; social media has allowed them to find each other. Members can use the site to connect with others who share their rare condition, recount their experiences, help each other to improve dialogues with doctors, and otherwise offer advice and support. In that regard, Rareconnect.org is not that different from other online communities. However, simply by assembling, members give themselves lobbying power to influence research and, at the same time, create a set of candidate subjects for that research.
In partnership with patient advocacy groups, Inspire.com hosts 190 disease-specific patient communities. Members use the social networking site free of charge to connect with each other, and strict privacy settings control what can be shared outside the community. Life science organizations can then pay for access to these patient populations and data they wish to share, using the site to recruit patients for studies, perform market research, and promote brand awareness. With more than 230,000 members, Inspire.com is itself a form of advocacy group, thanks to the sheer number of highly engaged members it brings together.
PatientsLikeMe.com is a social networking site of over 150,000 individuals with over 1000 different conditions. Like other social networking sites, members of PatientsLikeMe.com can find each other and engage in discussions. In addition, PatientLikeMe.com is a “health data-sharing platform” that uses creative data capturing tools to standardize the data it collects, and offers strong analysis techniques that allow users to assess, among other things, likely outcomes of particular therapies. The ultimate goal is to improve existing treatments and accelerate the pace of clinical research by strategically mining rich repositories of patient data. (While most companies promote their privacy policies, PatientsLikeMe.com touts its “openness policy” and the benefit of data transparency to the global healthcare system.) Last year, the company used data collected from 596 subscribers to challenge the results of a 16-subject study on the effects of lithium on ALS. Critics argue that this approach to evaluating outcomes can never replace conventional randomized, double-blinded, placebo-controlled clinical studies. Advocates counter that such trials have become so expensive and time-consuming that it’s imperative the industry explore other models. Click here to read more.
A recent documentary allowed me to see for myself how one set of parents has been using social media to make advantageous connections on behalf of their mentally ill daughter. In 2009 at age 6, Jani Schofield was diagnosed with Childhood Onset Schizophrenia (COS), a very rare psychosis. Jani was prescribed Risperidone, which the documentary noted was the only drug approved by the FDA to treat schizophrenia in children. Jani’s parents created a Facebook page to reach out to other care-givers and to give parents of mentally ill children a voice. The day after the documentary aired, I found the Schofield’s Facebook page. I didn’t have to scroll down very far to encounter a May 2012 posting from a researcher who was interested in establishing contact with patients and parents to collect data and discuss a study on the development of COS. I then navigated to the Yahoo Health site and performed a group search on “Schizophrenia”. There were 110 discussion groups that matched my search. On the very first results page, I encountered two groups, “Schizophrenia – parents” and “The Odd Parent Journey”, both of which dealt with, among other mental illnesses, the rare COS.
No one can predict for sure just what the future of social networking or the future of healthcare might look like, but I think it’s a safe bet that their futures will be intertwined and here before we know it.
by Laurie Meehan
by Laurie Meehan
This blog discusses trends and issues in the pharmaceutical and dietary supplement industries. Click the SIGN UP link to subscribe to occasional notifications of new blog posts.
