Yesterday while working on a new seminar I’ll be offering1 about patient engagement, I met a new Twitter friend, Mark Harmel (@MarkHarmel), and we talked on the phone for a while. (For some reason my thoughts progress best when I’m in spoken dialog.)
Mark is a healthcare photographer, social media consultant and in 10 days he becomes a public health graduate student. Check out his awesome post about photographing Paris. He’s pretty new to all this “e” stuff, so I talked through my content with him, which helped me fit it to the timeline.
Overnight he emailed about the value of knowing some wonderful, caring doctors. Replying this morning, I had a thought about why patient social networks are so game-changing: they create a new source of value from existing resources. I wrote:
Yes, knowing some good caring doctors is terrific. Then, e-patients share who those docs are.
Having access to something great is one thing… finding what others have, or sharing your finds with others – that’s social networking in health.
In my speeches I often note that on my very first exchange with ACOR, the members told me the four docs in the northeast who offer the only treatment that sometimes cures my cancer. One happened to be the guy at my hospital to whom I was already being steered.
But most patients are never even told that treatment exists, because most hospitals don’t offer it. From a policy perspective, I say that’s wrong: to not tell patients of a treatment that might cure them??? Because you’d lose the business??
And from the patient perspective, it shows the real impact of social networking: at its best it can connect information with the people who need it. That’s increasing value, and that drives change.
The change we’re experiencing is real, people. The ability to create value in healthcare depends on information, and patients’ access to valid and useful information is changing forever. Part of our work in the Society for Participatory Medicine is
- to develop better and better methods of access
- to teach people to share, and the value of finding what others have shared
- to teach clinicians the legitimacy of patients seeking info online
- to develop methods everyone can use to do it wisely – to filter the gold from the garbage
All of this is intended to improve – to refine, if you will – the process by which we amplify the value of the information that’s out there. Families are in need, healthcare is under stress. As I said in my TEDx talk last month, Let Patients Help.
This seminar was listed as Project 4 in my March post on 2011 projects. A developmental version will be delivered for the first time on Monday afternoon, May 16, as a pre-conference workshop at the 14th annual Colloquium of the Institute for Clinical Systems Improvement and the IHI. Conference website here.
Image licensed from iStockPhoto, #6689731