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Friday, March 20, 2009


It’s bad enough that your regular personal data is winging its way around social networks like Facebook and MySpace, but would you introduce your private medical information to the same kind of scrutiny? Many are and some for a very good reason, like finding the answer to a potentially life-threatening problem. And because many people do not know they are a likely candidate for clinical trials—the research that ultimately solves many of our medical problems—the participation in these programs has been severely limited.

In a Newsweek Web exclusive by Sarah Kliff, we learn about the newest social networking experiments being advanced by the healthcare industry. The concept is to collect a group of individuals with ailments who are willing to share their experiences with other consumers, doctors and pharmaceutical companies. Right there, you say, the reason for a lack of participation is a public who does not trust their personal medical data in the hands of the pharmaceutical business. And, you would be right.

Kliff says there is a plus side for those grappling with chronic diseases to locate the clinical studies and new treatments that could help them. But there is still another obstacle that has to be overcome by these clinical trials in addition to the mistrust of drug companies, and that is participants’ concerns for their safety., a service of the California HealthCare Foundation, says that some argue targeting patients for clinical trials “…raises ethical and medical issues.” Diane Colaizzi, with the Coalition of Cancer Cooperative Groups, says “...there are concerns about the reliability of data from clinical trials where the participants might be communicating with each other online.”

Two of the new medical social networks mentioned in the Newsweek piece are and Three of the pharmaceutical companies working with Inspire, who has 100,000 users, refused to allow their name to be used, but Merck did issue a brief statement which included their commitment to programs such as this. Inspire makes its money based on a flat fee for the recruiting service provided the drug company.

The question, of course, is what information you share online about yourself that is personal. Inspire urges users to “…create an extended online profile.” They do not suggest nor recommend specific ailments, nor medications being taken. PatientsLikeMe, on the other hand, lists specifics users might add to their profiles like patient condition/disease, treatment regimens, and their outcomes. They also ask for your name, address, e-mail and birth date. Inspire does collect clickstream data, which is a history of your Web browsing habits.

I did a post back in May of 2008, “How Long Before We Accept the Inevitability of Personal Health Record Databases,” that points out the plus side of electronic health records, which is one of President Obama’s priorities. That post was preceded by a series of posts on companies that have spearheaded the field like, Microsoft’s Health Vault and Google Health. Although my gut feeling always tells me to shy away from giving up any personal data, this is a field that requires further looking into, particularly re. those companies that are warehousing this private information.

More on all this later.

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