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.