Social Media and the Road to Patient Empowerment (and why stop there: disaster preparedness, Google and governance...)

More Than Just A Techie
Communication Tool?

The Disease Management Care Blog has two kin who recently went through major surgery. After being surprised by significant post-operative symptoms, they were told by their providers that the side-effects they were describing were "common."  In retrospect, there was little in the informed consent, the peri-operative discussions, documentation, education materials or discharge instructions that provided adequate warning.  In both instances, the response of the well-meaning, harried and overworked nurses and surgeons was the same....  gawrsh, we should include your insight in our education materials, so we can warn other patients!

Knowing how hospitals, nurses, doctors and educators compile these materials, the DMCB thinks the likelihood that actual patient feedback will be used is about as high as their VP-Administrator agreeing to forgo this year's bonus so the hospital can afford to give the case managers a raise. 

Everyone is just too busy.

The DMCB appreciates that NCQA, Consumer Reports and CMS are doing their part for post-op patients with the HCAHPS survey (more here).  There is also a large body of science on the topic that helps us understand the need for patient input, includes other more detailed surveys, shows it's possible to clutter patient awareness with too much information and confirms that many hospital workers know there is a problem.  What's more, poorly prepared patients appear to be part of a much bigger problem in a clinical domain that's been dubbed "transitions of care": after all, if the doctors can't get things straight with each other, where does that leave the patients?

Figuring the issue isn't going away, the DMCB wonders if "social media" and, in particular, patient-authored education wikis that uses online collaboration to taps into the wisdom of crowds is an answer. After a quick Google search, it appears to the DMCB that there aren't many of these kind of hosted wikis out there. Given the hospitals' overall performance in this field to date, maybe that's not surprising.  This may be something that, like Like Patients Like Me, will ultimately be up to health care consumers themselves.

This may be an area ripe for the leadership of the population health and disease management companies.  Maybe this will be the next step in the evolution toward greater patient empowerment.  Or maybe someone should develop it and sell it to a company. [Note to self]

But the DMCB Isn't Stopping There: Disaster Preparedness and a Looming Disaster for Google? 

And speaking of social media, the DMCB continues wonder where its potential will end.  For example, Japanese earthquake victims relied Twitter, Facebook and texting in the days following the disaster to get information on escape routes and shelter.  And by the way, which would you believe about radiation exposure risk: "tweets" from your trusted circle of known contacts or announcements from a government spokesman?

And if disaster preparedness isn't enough, how about the threat to that multi-billion company called "Google?"  Check out this (lightly edited) quote from an NPR report (with DMCB bolding)

But the story's not over yet. Daniel Roth from says what if people just start searching the web without Google. That kind of messes up the game for all the players.

Mr. ROTH: I know, speaking personally, I read a lot from what I see from my friends on twitter.

CHACE: Roth says your social network might be the next search engine. And it's still pretty hard to game the system of hearing directly from your friends.

Mr. ROTH: When they suggest a story, I'm way more likely to click on it, because it's already been vetted. So I spend less time on aggregation sites, and I spend more time looking to see what my friends are aggregating for me. And how do you win in that game? I think you win in that game by writing stories that people really want to read.

And Governance?

And if social media can be a threat to multi-billion dollar companies, how about being a threat to governments?  National security experts are undoubtedly sorting out its role in the fall of Egypt, the threat to Iran and China and the continuing turmoil in Syria.  Yet, it remains to be seen if Western-style governance will also remain immune. While 24-7 global access to multiple information streams isn't necessarily the basis of our economic and political discontent, we also don't know if old-fashioned representative democracy is the fix for the Middle East's turmoil. The Internet in general and social media in particular seem to be making any kind of governance anywhere on the globe difficult for both tyrants and elected officials alike.