Better Health Takes A Village

Achieving better health, like many aspects of life these days, is rapidly becoming more social.

I'll start with the example of Facebook's apparent value in hospital ratings.  A recent study in The Journal Of General Internal Medicine found a correlation between hospital Facebook ratings and readmission rates as reported on Hospital Compare, which may come as a surprise to some.

The authors refer to using social media to track public opinion as "sentiment analysis."  They further note:

While we can’t say conclusively that social media ratings are fully representative of the actual quality of care, this research adds support to the idea that social media has quantitative value in assessing the areas of patient satisfaction – something we are hoping to study next – and other quality outcomes."

One can argue that readmission ratings themselves are at best an imperfect mechanism for evaluating hospital quality, but since a recent Health Affairs article found that four of the most commonly used hospital rating approaches -- US News & World Report, Consumer Reports, Healthgrades, and The Leapfrog Group -- didn't agree on what the top hospitals were, even using supposedly objective measures, maybe social media ratings are as good as we should expect.

I find it amusing when providers object to consumer ratings on the basis that they are subjective.  In the first place, they've had decades to come up with more objective measures that consumers -- or even other professionals -- can use, without noticeable success.  In the second place, consumers seem to be pretty happy with such "wisdom of the crowd" ratings, as used by, say, Amazon or Yelp.  The traditional pat response to such examples is that health care is "different."  Perhaps it is, but that distinction may be vanishing faster than health care experts like...or realize.

Sentiment analysis is anything but sentimental.  IBM is trying to help businesses understand public perceptions of them by analyzing Twitter, just as Nielsen is realizing it needs to co-opt Twitter's chatter about TV shows in order to stay relevant in TV ratings.   Health care talks a lot about Big Data, but may not fully realize the potential in the non-clinical sources of that data, such as social media.

Use of social media isn't all about ratings.  Social media and use of communities have been seen as a promising tool for helping people with chronic conditions for some time.  Cancer patients and survivors have a plethora of support groups and communities, Weight Watchers now uses meetings (in-person or online) as one of their key weight management tools, and the America Diabetes Association sponsors multiple communities to assist diabetics and their families.

Last year, the eHealth Initiative published A Report on the Use of Social Media to Prevent Behavioral Risk Factors Associated With Chronic Disease, covering both its promise and challenges.  While they acknowledge definitive research on its impact is yet to come, the key to its promise comes from the fact that: "Health behavior is fundamentally influenced, shaped, and defined by social networks composed of friends, colleagues, family members, caregivers, and others."

Unfortunately, that's not how medicine has usually been practiced.

The granddaddy of patient sharing sites is probably PatientsLikeMe, which began primarily as forums for patients with specific conditions, and now is a for-profit company that earns its living by sharing its member data with health researchers plus pharma or medical device partners, who don't seem to mind if that information is subjective.  Walgreens, for example, is going to use patient feedback from PatientsLikeMe to replace, or at least supplement, those nearly incomprehensible prescription side effect warnings.

Smart Patients offers a similar service to PatientsLikeMe, while Apple just announced ResearchKit, allowing Apple users to make their health data available to researchers, such as for clinical trials.  We're just starting to scratch the surface.

Even physicians are getting into the act of collaboration.  Figure1 has been described as "Instagram" for physicians, allowing them to upload photographs and patient information in order to get opinions from other physicians.  SERMO positions itself as a "virtual doctors lounge," allowing physicians to crowdsource tough cases (although I'd be curious to learn how much of that goes on versus, say, complaining about insurers).  They claim 300,000 members, all physicians, and competitor Doximity claims even more, so there obviously is significant demand for this kind of virtual collaboration. 

Health care is patting itself on the back for Open Notes, which is slowly allowing patients to at least view their own health records, including doctors' notes.  They claim 4.8 million members have such access.  I admire the initiative, but someone wake me when such sharing is the norm, instead of the exception.  I'll only start to get excited when patients' records become truly collaborative -- and it is the patient deciding what is shared, and with whom.

If the EHR industry isn't careful, it's going to get supplanted by a sharing approach.  Facebook could do it, or Google, but it would be very different than traditional medical records.  Think it couldn't happen?  Ask the taxi or hotel industries.

Collaboration will really get interesting when it gets involved more directly into processes of care.  The Wall Street Journal recently profiled how some hospital ICUs are allowing patients and their families to participate more directly in what is happening to the patient during his/her stay.  Think how much more powerful this approach will be when -- not "if" -- it allows patients in an ICU to communicate with each other about common issues/questions, or even with patients in other ICUs with similar conditions.  Or allow them to ping doctors in other locations to participate in their care.

The Journal article also discussed making the various processes of care more transparent, as well as tracking progress of tasks.  E.g., not just using checklists but sharing them with patients as the tasks are happening.  Patients in many health care settings spend much of their time waiting, not knowing what is happening next or when.  Forcing the provider to disclose what is supposed to happen, when, and by whom would force radical changes that should benefit the patients.

I thought of this when I read a New York Times profile of BetterWorks.  Although The Times headlined the approach as using "computer games" to manage employees, the keys are really transparent tracking of tasks and social media collaboration from other employees (e.g., they can give "cheers" or "nudges") to help employees improve their performance.  It may have some aspects of gaming, but it sure sounds a lot like what continuous quality improvement programs are supposed to do   I would love to see some health care organization implement BetterWorks or a similar approach.

Imagine if patients also got to weigh in.

Social media, patient (or provider) sharing and collaboration, and other 21st century social strategies won't, in themselves, ensure our better health, but it's hard to see that they won't be part of the process towards it.