A Look at Social Media in Health Care -- Two Years Later

by John Sharp


Two years ago I wrote an iHealthBeat Perspective, titled, "Social Media in Health Care: Barriers and Future Trends." Let's take a look at how far we have come and whether my predictions are on target.

Online Communities and e-Patients

Since 2010, pharmaceutical companies have joined startups, patient communities and providers in the social media realm. Many startups, particularly those enabling patient communities, have matured and broadened their scope. PatientsLikeMe has expanded to more than 1,000 conditions, CureTogether has gained the attention of major press outlets and 23andMe is defining personal genomics.

In addition, both PatientsLikeMe and 23andMe have published results in medical journals, bringing further validation to social networks and social media as having legitimate contributions to medicine. A PatientsLikeMe study, titled "Perceived Benefits of Sharing Health Data Between People With Epilepsy on an Online Platform," was published in the journal Epilepsy and Behavior, and a 23andMe study, titled "Efficient Replication of Over 180 Genetic Associations With Self-Reported Medical Data," was published in  PLoS One, as well as the Journal of Medical Internet Research.

Meanwhile, white paper case studies have appeared on a regular basis. Examples include Forrester Research's case study about Radboud Hospital in the Netherlands supporting young cancer patients with an online community and Cleveland Clinic's use of a stepladder approach to achieve social media success.  

But none has been more influential or quoted than the 2011 report from Susannah Fox from Pew Internet on "Peer to Peer Healthcare." These survey results showed the ubiquitous use of social media by those with chronic conditions and a trend toward routinely reaching out to others through social networks for advice on managing illness.

Two years ago, the e-Patient movement was just getting on its feet. Now it, too, is receiving national attention in the media and blogs. The Society of Participatory Medicine and its associated journal have grown, as has their influence. The group has appeared at multiple conferences, as well as in videos on the Office of the National Coordinator for Health IT's website advocating the importance of electronic health records for patients. More recently Regina Holliday (also a hit at many health IT and social media conferences for her perspective on patient empowerment) was featured in a Newsweek article about the lack of coordinated care for her now deceased husband, who could have benefited from an EHR.

Hospital and Providers

Hospitals and health systems have moved beyond initial experiments with social media to integrating these tools into their marketing and patient engagement efforts. Facebook is becoming a key tool in patient engagement with encouragement from hospitals to post patient stories or notes of gratitude that are almost universally positive. Boston Children's Hospital is an excellent example with its announcements about events, media attention and blog posts with daily comments from grateful patients and parents.

Conferences specific to social media in health care have cropped up including the Ragan conference with Mayo Clinic, Cleveland Clinic's Patient Experience Summit, TEDMED, Medicine 2.0 and several European conferences (TEDx Maastricht, Doctors 2.0, Salud 2.0). Closely related to conferences is the growth of health care-related hash tags, particularly on Twitter. This has also spawned online communities, regularly scheduled tweet-ups and in-person meet-ups. #HCSM is probably the largest of these communities made up of health care marketing and others. Related are #HCSMCA for Canada and #HCSMEU for Europe. There is even a website, The Healthcare Hashtag Project, which tracks this trend.

Many hospitals also have launched blogs -- some provide general content, some are written by specific physicians and others are disease-specific. For example, the University of Maryland Medical Center's "Life in a Medical Center" focuses on hospital events, patient stories and timely topics. Then there is "Seattle Mama Doc," a blog written by Seattle Children's Hospital pediatrician Wendy Sue Swanson, which is incredibly popular -- way beyond her patients and the confines of the Northwest. In medical specialties, there is the Cleveland Clinic's "The Beating Edge," focusing on heart and vascular problems and written by cardiologists and cardiac surgeons.

Hospitals also are reaching out to online communities to engage them in the care process, including research. At the Mayo Clinic, an online community dealing with a rare heart disease, SCAD, brought in many volunteers for research studies through the community.  A "Heart Valve Surgery Blog" visited the Cleveland Clinic as part of a nationwide tour to blog from the patient's perspective on valve treatment at major heart centers. These are just two examples of the kind of opportunities for providers to engage directly with online patient communities.


A relative newcomer to social media in health care is pharma. This was not on my radar two years ago but has emerged as a real, if not controversial, force. The lead blog in this space is "Dose of Digital" by Jonathan Richman.

The major controversy has been around how FDA views social media by pharma. After a long wait that left pharma companies in limbo, FDA published guidelines in December 2011. They are still are being interpreted because they do not explicitly lay out do's and don'ts for Facebook, Twitter and other social media.

Personal Health Records and Mobile

Two years ago, I talked about personal health records and how some patient communities, in encouraging members to record and share the details of their treatment, had become PHRs. Meanwhile, Google Health closed its doors and Microsoft HealthVault continues to plug along. The hope for a tethered PHR (one connected to an EHR) to connect to an online community only now is being demonstrated in the Netherlands by MyZorgNet (My Health Network). Also, Practice Fusion's EHR system is using "social media-style messaging" for physician-to-physician communication.

I also discussed mobile devices two years ago, but did so in limited terms, looking forward to smartphones replacing standalone monitoring devices, which is happening now. What I did not predict was the explosion of mobile applications, including social media apps becoming the primary method for most users to communicate via social media. As smartphones have become pervasive, so have health apps that often have a social media component, whether that is the ability for a scale to post your weight to Twitter or the ability to transmit a diabetic blood sugar reading to a community. The Quantified Self movement, which is focused on this app-based monitoring, was just briefly mentioned two years ago, but it now has expanded to 60 groups around the world and 400 tools.

The Next Two Years

My predictions for the next two years are that mobile apps will enable connections between health care providers and patients in unique ways provided the legal barriers HIPAA imposes can be overcome. Hospitals and providers will make social media a key part of patient engagement to improve care and boost clinical trial recruitment.

Health monitoring through smartphones will become common for those interested in maintaining their health and managing chronic conditions to the point that self-monitoring data will become a routine part of medical appointments.

Online communities will become more integrated with health care delivery so that they will be "prescribed" by physicians, as will mobile apps that have been vetted. The app world has widely expanded how social media can impact care; with public-private partnerships and online community-provider partnerships, the future holds much promise.

Ariha Setalvad
Hi, I came across this piece and thought it was really informative. We, at Fueled, are also really interested in the role social media plays in the evolution of the healthcare industry. Below is a link to an article where we share our thoughts. Thanks for a great read!
Deborah Kohn
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