OCTOBER 16-18, 2019



October 16-18, 2019 | Boston, MA

For Patient Advocates Facebook is as Sticky as Ever

By: David Goldsmith, Chief Strategy Officer, WEGO Health

Despite a seemingly endless flurry of negative press, Facebook remains the go-to destination for patient influencers, according to the latest WEGO Health survey of patient leaders across hundreds of health conditions. 

Should this come as a surprise? Probably not. Patient leaders who actively contribute to Facebook’s public and private groups have consistently been among the platform’s most avid users. They turn to Facebook literally every day for empathy, support and information-sharing.  It is a veritable lifeline for people coping with challenging health conditions.

And yet, these same patient influencers are precisely the type of social media users who make Facebook a goldmine for marketers. They share far more about their health condition than other health consumers. Not just the conditions they are managing, but the treatments they’ve had, medications they’ve tried, what worked and what didn’t.

Some are dealing with conditions that are common and well-understood. Others are rare, complex and life-threatening. In either case, it’s the connection to their peers that keeps them coming back.

But in the wake of the data privacy scandals that have tarnished Facebook’s reputation, we couldn’t help wondering what kind of impact it was having on patient advocates. It stood to reason that people using the platform to share stories about their health might be more concerned about how their data is being used.

So we asked.

And it turns out that the vast majority continue to turn to Facebook as much as ever. Of more than 400 people in our survey, roughly 98% continue to be active on the platform, and 90% use it more than once a day. By all accounts, the need to be connected to their peers, and the desire to both receive and provide support, makes the trade-offs worth it.

That said, patient advocates are paying attention. Nearly half of the survey respondents said they have taken steps to optimize their privacy settings. Others said they use the platform less than in the past. They are also more discerning when it comes to choosing how and with whom they share sensitive information. Nearly half (48%) use private groups or direct messaging to limit the number of eyes on their posts.

The survey shows that social platforms like Facebook, Instagram and Twitter are deeply woven into the lives of patient advocates and influencers. Nine in ten use these and other social channels to advocate on a specific condition or health issue. More than 50% post content every single day.

It could be this is one reason Facebook just announced that it’s breaking with its long-standing practice to require that users post content under their real names. Going forward, users will have the option to post health-related information anonymously to Facebook groups, which will have a special “health support” designation.

The real effect of this policy shift won’t be known for some time, but it suggests that the presence of patients on Facebook is getting the attention it deserves in the company’s C-suite. Our survey findings underscore the importance of Facebook getting this right. Patients are a unique subset of its 2.5 billion users. There’s more at stake here than individual privacy. Much more.



As chief strategy officer, David Goldsmith works to identify new ways for WEGO Health to bring meaningful value to their patient network, as well as to health care organizations and life sciences companies that can benefit from patient leaders. David is also a member of the 2019 Connected Health Conference Advisory Board.

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