How can social media give us knowledge that can help people live healthier lives and help scientists cure diseases?
We’re not asking this question rhetorically, we’re asking it really and truly. Over the past couple of years at RWJF, we’ve received a handful of proposals that want to explore ways to harvest social media data to provide insight into disease, health behaviors, and population health issues. We’ve also received proposals to develop and/or test ways to harness social media data to improve health and facilitate research.
While we think social media holds a lot of promise here, we’ve turned down most of these harvesting and harnessing proposals. The reasons for the turndowns have varied, but a theme underneath them has been a sense that the proposals have all been one-offs, focused tests of really early stage applications that are unlikely to move into general use after the test is over.
Time for a closer look
But we think it’s time for us to take a closer look at this question of how social media can give us knowledge and help us live healthier lives. So, let’s start by assuming that at some point in the future, social media data is easily accessed, harvested and harnessed for the cause of better health. Now, think about where we are today relative to that future. We want to hear from you about the barriers and limitations that exist between current and future states.
For instance, barriers could include insufficient privacy controls; public fears over discrimination and abuse; lack of human subjects protection/consent in data use; or simply, concerns about “creepiness” in using social media data in this way. Limitations could be technical. For example, there’s no good way to link social media data with EHR data; natural language processing hasn’t advanced to the point where it’s easy to identify and extract signal; or there are issues with representativeness of sampling. Finally, we have questions about the meaning and interpretation of study results when using these types of data.
Ultimately, we want to see if there are some key issues that are in the way of us getting to that future.
Building a culture of health
As we work to build a Culture of Health, we need to continually explore cutting edge ideas and emerging trends that have the potential to accelerate our progress. If we end up funding in this space, we think investments that benefit the whole field—that help address general barriers and limitations—will be more productive in the long run.
So please share with us your thoughts about harvesting and harnessing, barriers and limitations. Please comment below or write to us at firstname.lastname@example.org. We’ll keep track of the comments and share back a synthesis.