Chronic Disease and Social Networks

by Jane Sarasohn-Kahn, MA (Econ.), MHSA, Member, HIMSS eConnecting with Consumers – Social Media Task Force

Chronic disease accounts for $3 in every $4 of health spending in the U.S. Four lifestyles – smoking, physical inactivity, harmful use of alcohol, and poor diet – contribute to the non-communicable disease burden which kills 2 in 3 people. At the same time, the U.S. spends more on health care than any other nation in the world. Although the U.S. adopts the most innovative new-new medical technology (from aortic valves to CT scanners), Americans’ health outcomes are generally sub-par. In the U.S., we’re getting a lousy ROI on health spending.

Jane Sarasohn-Kahn, MA (Econ.), MHSA

Jane Sarasohn-Kahn, MA (Econ.), MHSA

A powerful force can be deployed to move the needle on health outcomes: patient involvement in their healthcare. One way to health-engage people in everyday life is via social media.

graph 1

Social networking holds significant promise for engaging people in health and changing health behaviors. Two thirds-of people try to change their health behavior each year; 50% do not sustain those behavior changes, learned by the 2011 Edelman Health Barometer survey. When people connect to a social network of peers, though, commitment to behavior change is bolstered and supported, as the research of Christakis and his colleagues has found.

2 in 3 U.S. adults use social media, according to the Pew Internet Civic Tracking survey conducted in July-August 2012. More women than men use social networking sites. But a growing proportion of seniors does, too, up to 38% in 2012

Furthermore, mobile platforms are fast becoming enabling technology for social networking in health. In 2012, 26% of people with at least one or more chronic conditions used their cell phones to look up health information online.

graph 2

Social media use has grown in the past several years, particularly among chronically ill people. Social network site users who are chronically ill are more likely to gather health information from the sites compared with people who have no chronic conditions, 20% versus 12%. Susannah Fox, who led the social networking in health survey for the Pew Internet & American Life project, calls this peer-to-peer health care. Note that caregivers, too, engage in social networking in health, where a peer can be a parent of a sick child or an adult child of an aging parent. The second table shows that 28% of caregivers have used social networking sites for health support.

graph 3

But patients, and particularly those managing chronic conditions, are driving the use of social networking in health. Some patients seek social networking in health on general platforms like Facebook and Twitter. More advanced patients seeking deeper relationships online find support, solutions and tools from health-focused social networks.

The pioneers of social networking and chronic disease were CureTogether and PatientsLikeMe. CureTogether was founded by Alexandra Carmichael and Daniel Reda in 2008 first focusing on three conditions. The network expanded to cover 637 diseases and partners with many research organizations and university teams to discover cures, together. Think of CureTogether as a community for patient-driven clinical trials for conditions eluding old-school research protocols.

CureTogether was acquired by 23andMe in July 2012. 23andMe was one of the first consumer-facing genetic testing companies. The organization recently opened up its application programming interface (API) to allow outside developers to build web-based tools that complement 23andme’s offerings. This is another aspect of going social: for health collaboration.

PatientsLikeMe was founded in 2004 by Benjamin Heywood and Jamie Heywood, and their friend Jeff Cole. The team was inspired by Stephen Heywood, Ben’s and Jamie’s brother, who was diagnosed with Lou Gehrig’s Disease (ALS) when he was 29 years of age. PatientsLikeMe became one of the first online platforms for patients managing serious diseases, and today, hosts a community of about 170,000 patients managing over 1,000 conditions. On PLM, patients share very personal health information on their symptoms, aspects of daily living, and therapeutic regimens (including named drugs, dosage, and side effects). Patients here support each other, as well as provide raw data for researchers to mine (de-identified) with the explicit opt-in of patients who care to participate in such studies. offers a blog, a community and online tools for people and caregivers managing headaches. Originally built on a Facebook interface, now with over 40,000 “likes,” the portal has morphed into the largest single online source for all-things-migraine, bringing together thousands of migraneurs and caregivers along with expert clinicians who share practical advice for people living with headache pain. launched the Migraine in America patient study. The survey includes detailed personal perspectives from thousands of patients sharing opinions on working, daily activities, and experience with migraine drugs (both prescription and over-the-counter) and their effectiveness and side-effects.

WEGO Health is the largest social network of health activist bloggers – patients who are out, proud, and paying it forward for peers. This is where newly diagnosed patients can go to learn at the feet of patient-gurus. At WEGO Health, learning can take the forms of support and advice, encouragement, and honing new social networking skills like blogging and hosting online condition-focused chats.

Evidence supporting the use of social media in health for chronically ill people  is growing. In addition to many studies emerging from the previously mentioned networks, additional examples of evidence include the following, among many others:

  • Adults with either Type 2 Diabetes or coronary heart disease enrolled in an online community for a walking program involving pedometers showed greater engagement in the program over a longer period of time.
  • Smokers using QuitNet, a smoking cessation website with social support, had a 7-day point prevalence abstinence rate of 7% and a 30-day point prevalence abstinence rate of 5.9% after 3 months. This compares favorably with the CDC statistic that fewer than 5% of smokers trying to quit abstain for 3 months.
  • Social contacts significantly increased the adoption of healthy behavior among obese people.

Social networks in health are not a panacea for solving the complex challenge of chronic disease. Privacy continues to concern consumers when sharing clinical data that may be viewed “in public,” online. And, the evidence base on social networking in health must continue to be built to ensure best practices are adopted that most directly benefit patients and deliver value-for-money.

Patient engagement is hard. Social media exist organically in a larger context, where public policy, health plan benefit design, and personal preferences interplay and nudge people toward healthy behaviors.

One quite powerful nudge is coming in the form of accountable and value-based health care, which aligns incentives for providers, patients and health plans for patient-centered, outcomes-driven care. “No outcome, no income” is a powerful incentive for providers to focus on team-based care that puts patients not only at the center of the team, but as a valued member of the provider team, too.

Health is social. Social networks can and will play a growing role for patients that can empower them and their caregivers.

Jane Sarasohn-Kahn is a health economist and management consultant who works with the broad range of stakeholders at the intersection of health and technology. She focuses on strategy, qualitative market research, and health policy analysis for clients in the U.S. and Europe. Jane writes the Health Populi blog and can be followed on Twitter @healthythinker.

This entry was posted in Blogging, Health IT News and Developments, Patient-Centered Systems, Social Media and tagged , , , , , . Bookmark the permalink.

5 Responses to Chronic Disease and Social Networks

  1. eddodds says:

    I just happened to seee an article about one other kind of network effects which bears on healthcare -Jeff Immelt is hear speaking of energy grids but any digitized environment works to some degree – Immelt: success is domain expertise + analytics + ecosystem. You’ll see the analogy to the healthcare ecosystem

  2. Brad Tritle (@BTritle) says:

    A great overview and introduction to this subject. It is happening RIGHT NOW – and without any government regulation or financial incentive pushing it. Consumers have desires, and tools are being developed that either were generic and consumers use it for this purpose, or people – often passionate family members – start disease specific social media platforms because they see the need. I love this idea of either self-care/managment or delivering care where the patients are! Thank you Jane, for your valuable contribution. The HIMSS Social Media Task force also has a white paper for those that want a longer read on this subject, though I also highly recommend following Jane’s HealthPopuli blog, too, Here’s a link to the paper:
    Question: Are any provider associations, besides setting social media guidelines, actually promoting it and offering CME to learn how to properly use it for patient care, or is this a gap to be filled?

  3. Hi Jane, great post and exactly the area we focus on: social support for the prevention and treatment of chronic disease. Check out for smoking cessation (free, fun, social app).

  4. Candy Clouston says:

    Those 2 out of 3 people who die from chronic disease will die of something eventually regardless of poor lifestyle choices. I wish doctors would focus more on quality of life and less on pretending we could be immortal.

  5. Thanks for finally talking about >Chronic Disease and Social Networks | HIMSS Blog
    <Loved it!

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