A quick note of Clay Shirky’s lecture on Cognitive Surplus can be found at DavePress.
This is just a point about one of Shirky’s key examples, patientslikeme, cos it’s amazing.
As he pointed out, it completely throws open what we assumed about medical data. And particularly mental health.
US citizens are voluntarily publishing vast amounts of data about their medical conditions. The site then aggregates the data, creating some funky charts (e.g. charts of average dosage per drug), and, it claims, revolutionising medical research, treatment and understanding for both suppliers and users.
Plenty will worry about people self-medicating; one comment says
“PatientsLikeMe is the main reason that I concluded I had been mis-diagnosed depressive, instead of bipolar, and just recently decided to try new medication.”
Presumably that would worry a lot of doctors – but it’s unstoppable. The medical profession is going to have to change…but how? Will sites like this increase the average knowledge of medicine, enable peer-to-peer practitioning, or simply indulge hypochondriacs? Will a clinician’s role be in moderating sites like these?
But for champions of transparency and open data, it’s almost a holy grail: people are volunteering what would have been considered their most private data. The strictest rules apply to its release by organisations, so patientslikeme gets the individuals to ‘open’ it. They don’t seem to have to try that hard to convince: http://www.patientslikeme.com/about/openness
…we believe sharing your healthcare experiences and outcomes is good. Why? Because when patients share real-world data, collaboration on a global scale becomes possible…
Currently, most healthcare data is inaccessible due to privacy regulations or proprietary tactics. As a result, research is slowed, and the development of breakthrough treatments takes decades. Patients also can’t get the information they need to make important treatment decisions.
Furthermore, we believe data belongs to you the patient to share with other patients, caregivers, physicians, researchers, pharmaceutical and medical device companies, and anyone else that can help make patients’ lives better. Will you add to our collective knowledge… and help change the course of healthcare?
Never mind an online encyclopaedia. Collaborative healthcare is coming to a laptop near you.