New Scientist has picked up on the popularity of a networking site called patientslikeme. This is more than an information-sharing site, it encourages patients to record their symptoms and responses to treatment regimes on a regular basis. There is a star-based incentive programme for patients to keep their information up to date. The site makes money, not from advertising revenue, but from aggregating, anonymising and selling on the data to 'life science companies for treatments' (is that a euphemism for pharmaceutical companies?).
For the site to work, it means that patients have to forgo their privacy. The site encourages 'an openness philosophy'. Of course, you can still use a 'handle' instead of your real name, but many members upload photographs and make an extraordinary amount of information available. A bot like Facebook's live streaming, members with mood disorders can record 'instant mood', as well as a detailed breakdown of symptoms which are all plotted graphically. Check out Zephyr_Marie's profile as an example of how much information is available.
With rumours that DIPEx (a UK based website of interviews with patients) is going to become subscription-only, patientslikeme is potentially groundbreaking. It challenges a longstanding assumption that people are less likely to be 'honest' on the web. The site currently has 11850 members and covers ALS/Motor Neuron Disease, Anxiety, Bipolar, Depression, HIV/AIDS, Multiple Sclerosis, OCD (Obsessive-Compulsive Disorder), Parkinson's disease, and PTSD (Post-Traumatic Stress Disorder).
Although the numerical data is publicly available, but you have to be a member to access the patients' stories (on the forums). By foregrounding the data aspects, it tells only one, very medicalised, version of the patient experience. It's an interesting experiment though, and worth watching to see if it does herald a seachange in the attitude to patient confidentiality and medical data.