Anyone attending a Health 2.0 or health IT meeting in the past 18 months has (hopefully) been exposed to the force known as  Todd Park, Chief Technology Officer of the Department of Health and Human Services, and his mantra of “Data Liberación.” Data Liberación is the act of freeing data — in this instance, health data — locked within data silos, to be ‘liberated” allowing it to move about so that analysts can learn from it and develop strategies to better manage health for individuals and populations.

Now there’s a force advocating for “Social Media Liberación” in Health: health activists, the most engaged patients on the planet. WEGO Health polled 223 of the portal’s most active patients in March to update what WEGO Health learned from health activists and presented to the FDA’s hearing on social media in November 2009.

WEGO Health segments health activists as the top 3-4% of online health consumers who are social media ‘power users,’ keen to share their experience and expertise in their respective disease states and conditions.

On the upside in the collective mind of health activists, more health companies are engaging with social media online: in the 2009 testimony, 58% of health activists observed that health care companies were using social media tools to engage with people online; in March 2011, that proportion rose to 69% — fully two-thirds. Still, health activists are “getting impatient,” the survey discovered, with those health care companies that do not engage with social media in health. Activists assert that health companies have an obligation to correct misinformation that’s online by contributing accurate content about products, while complying with existing regulations. Those organizations who are already engaging with activists via social media are gaining their trust, the poll found.

What are those health companies engaged in social media doing? About one-half are leveraging social media for educational webinars and chats. 43% are using general (non-health specific) social networks like Facebook. Another 41% are participating in Q&A sites like Yahoo! Answers, and 39% are using dedicated health social networks and covering live events using social media (e.g., blogging live from medical conferences).

The use of Twitter (the king of micro-blogging sites) is growing among health care companies for engaging with people online. This category of social media use for online health engagement grew from 21% to 28% between November 2009 and March 2011 in the eyes of health activists.

Health Populi’s Hot Points: Health activists offer health companies four areas of advice for engaging with health consumers via social media. First, health care companies should bring their expertise front-and-center, using facts and knowledge to have a ‘more accurate conversation’ with health consumers. Of prime importance to this objective is that companies should correct misinformation about treatment options in social media; 55% of health activists agree that there are many misconceptions and misinformation about health companies’ products on general social media sites.

Second, communications in social media shouldn’t be about ‘selling,’ but ‘educating.’ That doesn’t mean branded communications are unwelcome — but when brands are being discussed, this should be done with transparency and following the rules, advice point number three. A corollary to this is point #4: be authentic, genuine, real — as one patient put this, “be proud of your participation, show how you can help.”

Authenticity is key to consumers — not just activists — engaging in health with stakeholders in their personal health ecosystems. Those companies that earn that trust will gain favor with health activists, who then pay it forward peer-to-peer with fellow health consumers in social networks. That’s not just Social Media Liberación — it’s good for peoples’ health and outcomes.

5 Comments on The most engaged patients want “Social Media Liberación!”

Onboard Health | The United States of Care Launches to Promote Healthcare for All of U.S. said : Guest Report 2 years ago

[…] health industry executives, and innovators, including Mark Cuban, the entrepreneur; Todd Park (father of “Data Liberacion!”); Ian Morrison (my mentor from our days at Institute for the Future); Margaret Laws (President of […]

HealthPopuli.com said : Guest Report 3 years ago

[…] health care managers, health industry executives, and innovators, including Todd Park (father of “Data Liberacion!”), Ian Morrison (my mentor from our days at Institute for the Future), Margaret Laws (President of […]

Todd Park Healthcare Innovation Tour and Data Liberacion | HITECH Answers said : Guest Report 10 years ago

[...] Innovators. He has unleashed agency-held metrics into open datasets or what he refers to as “Data Liberacion” and is hopeful to turn the HHS into the “NOAA of heath data”. An entrepreneur himself, Park [...]

Jane Sarasohn-Kahn said : administrator Report 10 years ago

Sherry-you identify an interesting new wrinkle in the world of social media, health and activists -- that is that advocates come in many stripes, some in the pay-it-forward mode (which I believe most to be) and some that are, as you put it, "building their brand." We will continue to observe how the evolution of patient/health activists will play out. As in all aspects of social media, when crowds source the field, then authenticity should be revealed vs. the non-authentic voices. Thanks for pointing this out. JSK

@cascadia said : Guest Report 10 years ago

Some of the earliest adopters of social media here in the Seattle area are those that have the largest marketing departments. They are often the highest cost providers in our health care system but not the highest quality (or best value) for consumers and there is a genuine concern about patient advocates that they are simply building their brand vs adding value to the conversation in much the same way that Pharma has worked in the past. It is very rare for example for health care providers or systems of care to share decision making tools that are odds with their business plans (back surgery for example - in which watchful waiting is very effective in many cases and rarely suggested by orthopedic surgeons as an option) There is also less funding for public health and non-profit collaboratives like the Puget Sound Health Alliance (in the Seattle area) that provide information on quality and outcomes to the community. One of the very real challenges is the belief that data alone is what drives behavior and that providers and patients make logical decisions about their healthcare. It isn't the same as purchasing a car where you can just give someone some metrics and expect them to make a well informed choice. Even there we see personal values and preferences and even familiarity play a huge role. So you nailed it with your focus on authenticity over brand but I don't see that happening yet in my local market (3 million plus people)

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