I finally got on Facebook, despite my teenage daughters' fear that I would 'creep on them' and interrupt their respective networks. Shortly thereafter, I began to post on Twitter. These two experiences have caused me to reflect on the power that these tools bring to communication and how they could fit into the connected health landscape.
Before that, a word about connected health, to level-set. Connected Health is an innovative care strategy that has as its goal improved quality, access and efficiency. The core of connected health involves the use of monitoring and communications technologies as tools to improve consumer/patient adherence to their care regimen.
When the strategy works optimally, more care decisions are made by the patient and by non-physician providers.
Patients stay healthy with fewer interactions with the traditional part of the care delivery apparatus. Providers can take a population view of their patients and render care just-in-time in contrast to when an office visit is scheduled.
There are four core design principles we apply to connected health programs: accurate physiologic data, shared with the owner in a meaningful, customized way, coaching from a source that is informed by the same data and optimized provider involvement. Examples of successful programs include telemonitoring for congestive heart failure, the use of text messages to prompt medication compliance and the use of an avatar coach to improve adherence to an activity regimen.
We just published a paper on the impact of online support groups on patients with psoriasis. When we queried 260 patients participating in four different online support groups, we found that about half of them perceived that participation resulted in improvements in quality of life and psoriasis severity.
I'd say in this case perception is reality since for this particular chronic illness, the goal of therapy is to achieve a state where the patient can achieve social function with a minimum of embarrassment and discomfort. There is no cure.
A more extreme example of the power of social networks in healthcare is Patientslikeme. Here, amazing communities of patients with like conditions have formed. The wisdom of the crowds is truly in force. Patients educate one another about their reactions to new therapies, and of course compare notes on how effective various providers are. They have even done their own, patient-generated clinical trials.
With this in mind, lets return to Facebook and connected health. One of the underpinnings of connected health is data-driven coaching. We suspect that the optimal coaching vehicle varies for each individual. In a recent market survey called the Edelman Health Engagement Barometer, it was noted that individuals have the most trust in their doctor first and in their 'friends and family' second when it comes to health information.
So it stands to reason that the social network could be a powerful coaching tool. Imagine if my daily step counts were published on Facebook by automatic upload and all of my friends knew my activity goal? Want to bet whether I'd be more compliant with my goals in that scenario as opposed to when only I and the pedometer know that secret?
But what of HIPAA, you say? Of course there are hurdles there, but we are living in a rapidly changing world. The younger demographic is composed of people who are used to sharing intimate details of their lives on, well, Facebook. They don't seem too concerned about HIPAA.
The near term implications of this trend are most relevant to your patient portal strategy. Like everything else in HIT, we start slow and take baby steps. The next time you have the marketing folks and the IT folks noodling on how to add value on the patient portal side, consider ways to make the portal more like Facebook.
Maybe offer patients who have the same doctor or practice the opportunity to form a community? Or create a community of patients with the same diagnosis. I can't predict where it'll go or who it'll add value immediately, but the world of HIT is undoubtedly becoming more patient-focused and my instinct is that there is something fundamental and important in the marriage of social networks and HIT.
Joseph C. Kvedar, MD, is the Director of the Center for Connected Health, Partners HealthCare