Patient Engagement
Patient Confidentiality Has to Be Rethought (05:07)

For any issue or idea at a health care organization, there are six committees that can say no and only one that can say yes, jokes NEJM Catalyst Leadership Board Founder Tom Lee, adding that a vote of 1500 physicians to 1 is a tie. In other words, new ideas are hard to get approved.

Implementing health interventions like social incentives and peer support could face opposition over concerns about patient confidentiality, Lee comments. “I don’t want to dismiss and say [patient confidentiality] is unimportant, but I think it’s got to be rethought to implement some of the kinds of things you’re talking about,” he says to David Asch and Michele Heisler.

“Not only is supporting patient privacy politically correct, but it’s also correct. Some things are not both — that one happens to be both,” says Asch. “I don’t want to say that the importance of privacy is overstated, but I think we can parse it in a lot of ways.”

Research has found that people don’t care much about the sensitivity of their health information, who uses it, or consent, but they do care about its usage. Asch provides an example: in random surveys of the American public, people were much happier to let scientists use their clinical information without their permission than they were to let marketers use that same information for advertising with their permission.

“I’m going to guess that for a lot of the things we’re talking about, there would be a fair amount of buy in for that on the patient level, but we’d have to convince that one physician who is going to raise his or her hand and try to play that privacy card,” says Asch. “It’s a real issue, but I think that there’s some data that can help us overcome that issue.”

People who opt in will choose what information they want to give, because they will be selecting from a menu of options, adds Heisler. “In a sense, they’ll be giving consent.” She describes how with group peer support and peer coaches, whether in person or online, rules are established up front, including confidentiality — “what is talked about here doesn’t leave here.”

Heisler emphasizes that social networks are not a substitute for medical care, but a complement. With peer support, peer coaches, or reciprocal peer support, participants do not give each other medical advice — this is part of the guidelines, says Heisler. Instead, they talk about tough behavioral changes. “If you’re in one of these interactions, you can choose just to talk about whether you walked 3 miles or whether you walked around the block.” And then it’s the health professionals who give patients advice about medications and diet, for example.

“These social networks help people adapt [medical advice] so it fits into their daily lives, and it helps give the support, the motivation, the accountability so that they can actually follow through. Because I think, as others have said, many of our patients know what they’re supposed to do, as we know what we’re supposed to do, but it’s really tough to do it,” says Heisler. “It’s tough to initiate some of these behavior changes; it’s tough to sustain them. And that’s where peer support, family and friend support, can be so powerful.”

From the NEJM Catalyst event Hardwiring Patient Engagement to Deliver Better Health at Kaiser Permanente Southern California, April 13, 2017.

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