Participatory healthcare hurt by provider attitudes, poor quality of online health info

BOSTON—Despite a growing body of evidence suggesting that patients can make valuable contributions to their healthcare, they are too infrequently asked and are often discouraged from participating, according to the panelists of a Sept. 15 presentation at the 2012 Medicine 2.0 Congress.  

“Nobody yet is really asking patients to contribute to patient safety data,” said Susannah Fox, associate director of digital strategy for the Pew Internet & American Life Project. “We’re asking them to contribute to Facebook or Yelp. What if we could harness this amazing wave of technology adoption, start getting all the opinions we know are out there and put them into a central location?”

Joe Graedon, MS, a public radio show host and syndicated columnist, pointed to an online community of patients who determined a discrepancy in the length of time it took a brand name drug to reach peak concentration compared with a generic drug. “It was patients identifying a problem that no one else discovered and it led to quantitative data that confirmed their experiences. It’s an example of how connecting people can identify concerns that would never show up any other way.”

More than four-fifths of adults currently use the internet, according to Fox’s research. Broadband internet users complete an average of seven interactions online per day, two-thirds of all internet users are registered on social media sites and approximately four-fifths of those, or 60 percent of all American adults, use the internet to find health information. Each of these instances represents an opportunity to engage with patients or to collect data on what patients care about, but healthcare isn’t taking advantage of them.

There are a variety of reasons for healthcare’s resistance to engaging with patients. Part of it is attitude, according to Daniel Brian Hoch, MD, PhD, an assistant professor at Harvard Medical School and a neurologist at Massachusetts General Hospital in Boston. Prevalent among providers are the beliefs that patients lack expertise, patients don’t want to collaborate, errors will occur, workflow will be interrupted and providers will seem unprofessional if they engage patients. These and other concerns, such as potential for malpractice, have some basis in reality, but providers need to start reformulating their attitudes toward and preconceptions of patients, Hoch said.  

There are pitfalls to finding health information online, according to Lisa Gualtieri, PhD, ScM, an assistant professor at Tufts University School of Medicine in Boston. A lot of online health information can be unreliable and reliability is difficult to discern, but that gives providers even more reason to engage their patients. Healthcare needs to end the unwritten “don’t ask, don’t tell” policy surrounding online information, according to Gualtieri. Providers should asking patients what they know about their health and where they learned it, and patients should be more forthright with providers when discussing health-related online activities.

“Can these pitfalls be avoided?” she asked. “Yes. There are three things: better health literacy, better trained healthcare professionals and better online information.”