Clinical Research Needs Online Communities

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.

What’s In Your Medicine Cabinet?

Some people are ashamed to admit that they choose generics over name brand drugs. Even worse, dare I say vitamins or drugs altogether! I read an enewsletter article today published by Dr. Kevin Pho in response to this NY Times article written by Alex Williams. The gist is hard times are forcing some people to turn increasingly to over-the-counter, self-help therapies. I think it makes sense for a large part of the population, but that’s just me.

As Alex points out, this is clearly part of a broader trend called consumer-directed healthcare and not necessarily the part that the healthcare industry wants to talk about. Sure there are cons to not going to a professional and receiving accurate diagnoses with a few prescriptions to go along with them. The problem is everywhere we consumers look, it just looks like doctors, pharmaceutical companies and insurance firms are benefiting  even while insurance premiums, drug costs and co-pays are on the rise. How can consumers be expected to trust a system, especially during hard economic times, that is attempting to bankrupt them?

Surely, some key industry players are staying awake at night. Insurers thought consumer-directed healthcare would become what they want it to…high deductible insurance plans, health savings accounts and the like…

What’s surprising, but not really that surprising, is consumers haven’t exactly leaped onto the bandwagon. Maybe they’re out buying vitamins…