Data, Empowered Patients, and Health Literacy: an Early Review of Social Health 2011

One day. One conference. So many powerful ideas, my head is still spinning.

This year’s Social Health (SXSH) 2011 unconference in Philadelphia was one of my favorite healthcare events in recent memory. Kudos to the “industry-side” organizers, Shwen Gwee and Dana Lewis, and the “patient-side” organizers, Jenni Prokopy and Kerri Spalding (better known in social media circles as @ChronicBabe and @sixuntilme). They assembled a dynamic group of speakers who brought crisp presentations packed with good stuff to a diverse audience of healthcare marketers, physicians, patient advocates, wellness specialists, and others.

There are so many ways to parse what we learned, I could probably write 10 articles on Social Health. A few core themes in particular stuck with me; they are rich in implications for all who work in healthcare, pharma communications, and patient education. It’s going to take me a few blogs to digest it all for you. For starters:

Healthcare is entering a crisis of comprehension.

While drug patent expirations and hazy FDA guidance get all of the headlines, a larger issue will undoubtedly be whether health literacy impacts Washington’s goal of empowering patients with their own medical data. Todd Park, the chief technology officer of the US Department of Health and Human Services, excitedly shared the administration’s many data initiatives, including giving Bluebutton access to US veterans—more than 400,000 of whom have used the service to download e-copies of their health data. When you look at the actual documents produced and sent to vets—a sample is here—you’ll understand why I use the phrase “crisis of comprehension.” Consider this snippet:

Test Name: COAGULATION TISSUE FACTOR INDUCED
Result: 9.9 Low
Units: SEC
Reference Range: (11.9-14.5)
Interpretation: SEE INR FOR CRITICAL VALUE CUT-OFF.
Performing Location: PORTLAND, OREGON VA MEDICAL CENTER 3710 SW US VETERANS
HOSPTL RD , PORTLAND, OR 97239
Status: Amended
-----------------------------------------------------------------------
Comments: PT. reported incorrectly as 9.0 by [104353-VA648].
Changed to 9.9 on Jun 06, 2011@12:08 by [87277-VA648].

Hearkens back to the days of teletype machines and ASCII printouts, doesn’t it?  Imagine you’re the veteran to whom this data belongs. Or imagine you’re a caregiver hoping to learn more about your loved one’s medical history. Reading the above, should you panic? Should you look up coagulation tissue factor induced on WebMD? Call the doctor to find out why the result was “low”? Not worry about it because—whatever this all means—the result was “reported incorrectly"?

To his credit, Park told the audience that for matters of health literacy, he’s relying on us—the communicators, health educators, experts—to dress up this medically oriented data and “skin” it for the public’s view. If the supply of untethered data accelerates at the pace Park and others are projecting, a huge lag will open up between when health consumers receive it and when educational tools are built to help them understand it. Our job, then, is to analyze this growing swell of patient data initiatives and anticipate the health literacy stumbling blocks. Making patient data meaningful to everyday people struggling with medical conditions is a great challenge and opportunity.

Or, in the words of Park at SXSH: “I think this is the greatest opportunity since the Internet itself.”

We'd better get moving.

Jeff Greene will write additional articles on Social Health (SXSH) for the HealthEd Blog.

 

Jeff Greene
Director, Digital Strategy
HealthEd

 

 

 

Comments

[Uncle Mike]

If you think this is bad, there are soon going to be 68,000 ICD9 (disease codes) and there are already 7,800 CPT (procedure codes) for physicians to keep track of when submitting insurance bills.

[Kristina Anderson]

Well, we've known it was coming... like a small wave that will turn into a tsunami that will leave all patients gasping for breath and grabbing for the lowest hanging branch. May all of us health communicators serve as those branches and be there for those who need us most. Thanks for your post.