Have you dared? It is a growing trend where people share their health information online, most frequently with people who have the same condition or prognosis.
I’ve shared health information here a couple times, in the form of blog posts / stories, but I haven’t shared the info directly from a site that contains my personal health info. Until recently.
A few weeks ago I was giving a presentation on “Patient Engagement for Pharmaceutical Companies” and showing how it was possible for clinical trial subjects to utilize medical devices in the home as a way of maintaining adherence to the treatment regimen and reducing the number of visit to the clinic to have measurements taken.
The example I gave was of a hypertension study, where the patient would take their blood pressure daily.
The data from the blood pressure cuff would automatically be uploaded into Microsoft HealthVault and from there synchronized into the Clinical Trials Electronic Data Capture System. Pretty cool.
Of course, the patient also has access to their data. In my case, I prefer to use the Heart360 app, which gives a great dashboard of your health information.
Now, here is the interesting part. When I took my BP it wasn’t the nice 140/88 that shows in the example above. No, my blood pressure was 156/95 – which, frankly, isn’t that good. A little high.
When I later viewed my BP info the the Heart360 site, I noticed that there was a “share my progress” option, to send the information either to Twitter or Facebook. Those options take my health info from a dashboard that only I can see to sharing the health info through social media.
There are side effects to socially sharing your information, primarily that your information is now open for comment or other social interaction. And that is precisely what happened.
Within a matter of a few minutes, I had Twitter replies and comments on my rather high blood pressure – one of which was from Dr. Bill Crounse, author of the Health Blog at Microsoft.
Pretty funny – of course, my BP isn’t normally there, and yeah, Dr. Bill (who is a friend and colleague) was right to comment on it (he is a Dr after all!).
In the end, it wasn’t surprising to me that it was that high as I wasn’t exactly sitting still or keeping my arm at the appropriate height. It was a demo, and I was moving around, gesticulating, talking (and projecting). I was surprised the BP cuff didn’t give an error.
Of course, I socially shared the information in a very public format. You can also share your information directly with other people who have similar conditions, using sites like PatientsLikeMe and others, in ways that are less public and more targeted.
It’ll be interesting to watch and see how the social aspects of health information develop over time.
It begs the question: how much are you willing to share and in what venue?