Coming to Social Media in Care Delivery Tech Demo Day: Linking social networks and personal health records

There is no shortage of enthusiasm for the use of social media in health care. Unfortunately, there are few models for actually integrating social media into actual health care delivery itself. Until now.

This paper popped up across my radar when it was published in April, 2011, and presents something i had not seen before – the connection of a robust social network to a personal health record, and the data secured within, in a privacy supported way.

We followed up with researchers Elissa Weitzman, ScD, MSc and Ken Mandl, MD, from Department of Pediatrics, Harvard Medical School, and Children’s Hospital Boston and have added this work to the group of technologies that will be presented at “Social Media in Care Delivery Technology Demo Day,” at the Garfield Center (@KPGarfield) on September 15, 2011.

Here’s what they mashed up together:

  • The existing TuDiabetes international online social network, based on the Ning platform, which implements the Open Social standard
    • An important feature of this network: “The network uses a team of volunteer members to review membership applications and member activities in an attempt to limit the presence in the community of persons seeking to profit from engaging with the community in a duplicitous or non-transparent fashion.”
  • TuAnalyze, a new application that is also front end for a personally controlled, user-managed access personal health record system known widely as INDIVO
    • The use of INDIVO allows members to specify preferences for sharing their HbA1c data, either at the individual level, the population level, or not at all with other members of the network (but with individual charts and graphs). The most restricted level of sharing is the default.

What does this open the door to? A lot.

First, discrete data can be brought into a social environment, at the discretion of the patient. The innovation is that this data in the future might be brought over automatically from the patient’s PHR, which opens up the door to the patient bringing their own health data into the social environment without typing it in manually, if the PHR is linked to their comprehensive electronic health record.

Second, this makes the possibility of bi-directional sharing possible, such that a patient could “share back” to their physician, nurse, care team, information from a social network that they deem important to their health.

Third, this approach respects the privacy and the workflow infrastructure of a modern personal health record, which makes it possible, in turn, for a physician or nurse to integrate it into their day.

In other words, the physician and nurse do not have to log in and participate in the social network or “friend” their patients. This could create a professional, managed, relationship, with the data being brought to the physician’s desktop from the place where the patient is.

The result is the possibllity of the end of the social network sitting out there without the health care system’s participation. This could reduce gaps between patients and physicians, for care teams to know more about who their patients are. Through this medium they could listen better to both the “mentionables” in health care and also “the unmentionables” – the things patients don’t bring into the health care system, or keep them from coming in at all (for more about this, see Eliza Corporation’s work on this topic: “Sex, Money, and a Crappy Boss: The “unmentionable” stressors the healthcare industry can’t afford to ignore” ).

Why is this important and who is it important to?

My friend Susannah Fox (@susannahfox) research shows, year after year, that people most want to receive health information from a health professional. At the same time, they are also engaging in the use of the Internet to research health information and network with others doing the same, but not at the level that we should expect (see my uppity comment on here).

Currently the two activities are segregated, and by the way, Elissa’s other paper: “Social but safe? Quality and safety of diabetes-related online social networks” shows the impact of this segregation. There are variable, bordering on concerning, quality and safety attributes of current health social networks in diabetes. As you read this paper, you wonder what it would be like if trusted health professionals could be present and supportive in these spaces, because people want to network and health care professionals want them to network to improve their health.

Imagine getting health information and providing health information with and to your physician, in a social network, at the level of your interest in sharing and communicating, at the place where physicians can integrate this information into their workflow.

It’s worth learning more about, isn’t it?

This is why Elissa has agreed to come and share at our technology demo day, so that an audience engaging in integrated care delivery could visualize what it might be like to engage in social networking to enhance a care relationship. Exciting!

We’ll be sharing the other technologies to be presented soon.


Fantastic post Ted- and very timely- again! Thanks for bringing Elissa's study to our attention. I am impressed with the multi-dimensional aspect of this social network portal and most imporntantly how it goes that step further in adding value to the delivery of care. Rather than being simply a knowledge-portal it extends its' reach to adding value to patients and the quality of care delivered by medical professionals. Indeed a glimpse of the possibilities for the future!

Ted Eytan, MD