Facebook’s IPO last year received a lot of media attention. While the news was mostly financial, the huge sums of money being discussed were not the only numbers associated with the social networking site that can give pause. Facebook now boasts more than a staggering 1 billion users. To put that in perspective, that’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 the curative powers of chicken soup over dial-up has evolved into myriad online communities that have become invaluable to patients, caregivers, 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. Commercial sites funded by sponsors, investigators, CROs, and/or SMOs, such as Clintrialsforyou.com, are also available to provide free information to prospective patients about clinical trials in their area. Many non-profit organizations have websites that offer clinical trial search capabilities, supplemented with explanations about the clinical trial process, associated risks, enrollment procedures, and the results of completed trials. The American Cancer Society’s website, for example, includes a clinical trial search service that matches patient input against the eligibility requirements for the studies in its databases. The patient can then review the search results, contact study coordinators directly, or speak with clinical trial specialists at the American Cancer Society about trial participation. 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.
While not social networking sites per se, these websites do indirectly connect patients with researchers (who can then interact with each other, albeit outside the purview of the website). Social networking, however, connects patients to patients. It gives them a communication channel, creating communities able to influence research and policy, and advocate for advancements. And the discussions that bond these communities generate a very fortunate byproduct for health science organizations: 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 more than 150,000 individuals with more than1000 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 allowing 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. To read more: http://online.wsj.com/article/SB10001424052748704489604576283010994997034.html#articleTabs%3Darticle.
And if social networking is a powerful tool for raising awareness, collecting data, and making connections, it’s also really effective at raising, collecting, and making something else…money. In 2010, the Entertainment Industry Foundation used social media to extend the reach of its Stand Up To Cancer telethon. They streamed the broadcast event live on their Facebook page where users could use Facebook credits to make donations, then post updates on their timelines to spread the word about the charity, the event, and their donation. Sites such as GoFundMe.com, Crowdrise.com, JustGive.org, and NetworkForGood.org offer a variety of features to simplify and track donations, connect individuals with charities and causes, and provide tools to implement fundraising events. They can be used alone, or in conjunction with social media sites by posting or tweeting a link. Some fundraising websites provide services that specifically integrate with Facebook and Twitter. These sites act as a type of third-party “middleware” that makes use of the underlying social network platform, but adds functionality specific to fundraising. Causes.com, for example, lets individual Facebook users launch online campaigns using Facebook Fanpage tabs, and allows non-profits to build communities of supporters and volunteers, distribute petitions, and raise funds online. Combining social networking with tools specifically designed for fundraising creates a very efficient and powerful mechanism for raising money to pay for research and fight the effects of disease.
At the rate of change that both social networking and healthcare experience, no one can predict for sure just what their futures might look like. I think it’s a safe bet that their futures will be (1) intertwined and (2) here before we know it.
See more articles written by Laurie at www.polarisconsultants.blogspot.com.
Laurie Meehan has been with Polaris Compliance Consultants, Inc. since 2008, writing SOPs and managing a variety of internal and external projects related to training, technology, social media, and documentation. Prior to joining Polaris, she worked at a major telecommunication research and development company where she wrote requirements for telecom services and products and spoke at numerous industry forums. Ms. Meehan also teaches math at a local university and tutors high school students in math and SAT prep. Ms. Meehan holds a Bachelor of Arts degree in Computer Science from La Salle University and a master's degree in Computer Science from Drexel University. She can be reached at firstname.lastname@example.org.