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.

Today, we got the results of an online poll we conducted on LinkedIn, a social networking site for professionals seeking to manage and further their careers. When we decided to make healthcare one of our social change focuses, we began brainstorming what type of people would be most interested in helping us further this cause.

One path we talked about was uninsured people, but we we assumed a lot of things about this group that discouraged us from reaching out to them. One assumption was that they were more likely to be unemployed and therefore hard to reach without a way to identify them through an employer or other trusted source. Instead, with further research on the matter, we found out that uninsured people are more likely to be employed than not, with over 80% of heads of households in this group holding a job according to the Robert Wood Johnson Foundation project, covertheuninsured.org. Another assumption was that uninsured people were more likely to work for very small companies in fragmented markets, and again, difficult to identify or reach out to. In reality, 1 in 5 uninsured workers are employed by firms with 500 or more employees.

So back to our online poll. We figured if most uninsured people are employed, polling LinkedIn users could be interesting. The results were interesting, if not saddening. More and more people are unemployed and uninsured, or employed and yet uninsured. Some of this has to be accounted for by people simply opting out because they do not think they need it. But that cannot be all there is to blame. Here is what we think: most of these people cannot afford it, or their employer doesn’t offer a suitable option for them.

Here are some comments from the respondents of our poll:

I am employed and insured, but after having my baby my insurance per month went from around 60.00 for just me, to 360.00 for both of us. Ridiculous!

Although [I am] un-employed, but insured, my COBRA will run out in two months… 

I am self-employed and insured paying over $15,000 annually for “normal” health insurance to include my immediate family and step-children. This is not including office visits. I see the doctor about 2 or three times annually max, there has got to be a better solution!

Insured but not with a good policy, which is very much the story of most peoples lives. With the amount of money that I spend annually on insurance you might as well lump me in with the percentage of those who don’t have any at all.

Agreed! There has to be a better way. Ntrypoint Media is cooking up a different kind of solution by forging unique partnerships with businesses and the healthcare industry to share information in powerful ways that results in lower costs for everyone involved, and better quality care. Our first project is feelWell Online. Learn more here.

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…