While Washington politicians duke it out over healthcare reform and what President Barack Obama called “health insurance” reform in his press conference on Wednesday night, ordinary consumers are cooking up a reform of their own. Young people who graduated this year without job prospects or health insurance and those workers who have lost their jobs and their health insurance, have found a way to change the game.  It’s called feelWellOnline.com. It’s a new site developed and operated by Frisco, Texas-based Ntrypoint Media now in its seventh month in beta that lets consumers, particularly those who are uninsured, earn “credits” to reduce or eliminate what they pay for healthcare by proactively getting involved in clinical research sponsored by academic institutions and big pharma.

Ntrypoint Media hopes legislators will pay more attention to this form of healthcare or health insurance reform that helps the uninsured by asking them to take personal responsibility for managing their health, rather than taxpayers. Hundreds of consumers have already signed up and earned over a million social credits to cover the cost of over-the-counter medications and preventive services from participating merchants. feelWellOnline.com, similar to sites like Inspire and PatientsLikeMe, is also one of the game-changing ways pharmaceutical, biotechnology, and medical device companies are engaging directly with consumers to inform them about clinical trials, track adverse events and improve screening and retention of clinical trial patients. According to Newsweek, 80 percent are delayed at least a month because of low enrollment. feelWellOnline.com does not sign up consumers for clinical trials, but facilitates the pre-participation education process, post-trial nurturing phase and referrals from patients to people they know who would benefit from participating in a clinical trial.

What makes feelWellOnline.com so different from typical online research communities or other social media such as Facebook and Twitter is how the site addresses information security, regulatory compliance such as the Health Insurance Portability and Accountability Act (HIPAA), and Good Clinical Practice (GCP), including informed consent. For example, HIPAA compliance requires adherence to specific data protection, intended use, auditing and disaster recovery policies. A basic review of most, if not all, social media would show they have a lot of work to do in these areas. Also, GCP requires that no clinical trial investigator involve a person who has not granted the legally effective informed consent or the person’s legally authorized representative.

Ntrypoint Media works with clinical sites, clinical research organizations and life sciences firms running trials in North America, and soon internationally.

There is no shortage of articles written about how pharmaceutical, biotechnology and medical device makers supposedly fear the Internet and social media. That’s why I am glad to see social media playing an increasing role in patient outreach as evidenced by sites like UC and Crohn’s, Novel Patient and PatientsLikeMe. Recent research published on the Pew Internet & American Life Project website found that 64% of Americans search the Internet for health information and defined these internet users as “e-patients.” It goes on to say that this group is more likely than other internet users to engage in social media.

So why is the life sciences industry still treading slowly if the Internet is more or less ripe for engaging e-patients with social media? Likely, it has little to do with fear in the sense that one is afraid of the dark, and more to do with strict regulations that govern their clinical research activities. In general, social media doesn’t fit the clinical research mold because of information security, regulatory compliance and no consideration for Good Clinical Practice (GCP).

• Encryption at all levels of communication, from login to logout, should be applied to protect information shared through social media and using online communities
• Specific data protection, role-based access, intended use, auditing and disaster recovery principles must be followed for HIPAA compliance
• A key component of GCP is protection for patients through Informed Consent

A basic review of most, if not all, social media would show they have a lot of work to do in these areas and the life sciences industry has good cause to be guarded in using tools like Twitter, Facebook and YouTube. However, I came across an article published in May of this year offering 10 suggestions for using Twitter for clinical trial patient recruitment. It offers good suggestions to get the word out about clinical trials, but I would say not as good as an online  research community. The community has to be designed with the considerations described above first and foremost, but also allow clinical investigators to stay engaged with patients before, during and after specific studies are done. The feelWell Online Online Research Community is an example of this approach that bridges the gap between social media and clinical research. Researchers can learn more here. It helps speed up patient recruitment, increase pre-screening intelligence and retain patients throughout the clinical trial and for future studies.

It is time life sciences firms take a more serious look at social media in the form of an Online Research Community like feelWell Online.