Is Online Privacy Overrated?

You and your doctor are partners. You are both responsible for taking care of you. For the patient to carry his or her own weight in this symbiotic relationship, the acquisition of knowledge is key. If you don't learn as much as possible about your particular disease or ailment and the treatment options available you will not be able to contribute to the partnership, the goal of which is your good health. I recently became aware of a very interesting website that helps patients learn about their own health needs by reviewing the detailed health care history of other patients with the same or similar needs. The site is called Patients Like Me. The website takes a counter-intuitive approach toward patient privacy in order to provide what just may be a tremendous service. On the site patients provide each other with detailed descriptions of themselves, their health issues, treatments, symptoms, medications, etc. The idea is that a participating member with say ALS can review the experiences of other patients with ALS in order to get a sense of what worked and what didn't. In this way the information from the community can be shared with your physician to decide upon and tweak a personalized treatment plan. The website allows searches by symptom, disease and particular treatment. According to the site's developers a research team has been retained to post about specific medical studies of interest to the community.

As will services like Google Health, members of the Patients Like Me community arguably give up something in order to participate. Whenever you post personal data on the internet there is a risk that persons that you may not wish to have such information will. That important concern noted, it seems to me that for many patients the reward my well be worth the risk.