The term "Patient-centered" has become something of a mantra in the nation's current health reform efforts. There's widespread agreement -- at least in theory -- that putting the patient at the center of everything is important but, as demonstrated in discussions at the recent AcademyHealth National Health Policy Conference, there is no exact blueprint for how to accomplish that.
Patient-centeredness means many things to many different people, but at its core are issues of shared decision-making and balancing how much the patient should really be in
Benjamin Roman, MD, is a Robert Wood Johnson Clinical Scholar in residence at the University of Pennsylvania.
the driver's seat: Patients want more information, but too much is overwhelming. They want to be nudged to do the right thing for their health, but not nagged. They want to choose healthcare wisely, but they don't necessarily want less. Doctors want to involve patients in decision-making but don't know how, or what evidence to use for the discussion.
Conflicting messsages Take, for example, some conflicting messages at the AcademyHealth event: On one hand, Farzad Mostashari, MD, the National Coordinator for Health Information Technology, lauds the Veterans Administration and Medicare's efforts to make health records easy for patients to download via a program called Blue Button. On the other, Jessie Gruman, PhD, of the Center for Advancing Health, a cancer patient and self-described techie whose organization is focused on increasing people's engagement with their health, laments that mobile health apps are not up to snuff yet and can sometimes be downright annoying to patients.
In the same session with Gruman, Patrick McCabe of the public relations firm GYMR, which has been part of the Choosing Wisely Campaign from the American Board of Internal Medicine (ABIM), says that his recent experience in focus groups is that patients seem ready to start acting like rational consumers: they are comparison shopping, and aware of rising costs. He argues that merely suggesting that patients "talk to their doctor" as advocated by the Choosing Wisely campaign is enough to move the needle on overuse and unnecessary care. From the audience, though, there was disagreement: Patients are not sure what they need, have a tendency to think "more is better,"
Photo: Hoag Levins
Patrick McCabe, a PR executive heavily involved in health-related market research says more patients are acting like rational consumers.
and rely on their doctors to tell them what they should do.
Doctor-patient decision making Then contrast the efforts of people like Charles Ornstein with those of Catherine Gallagher, PhD, and Lori Frank, PhD. Ornstein, a journalist at ProPublica and President of the Board at the Association of Healthcare Journalists, believes in putting information directly into consumers' hands. ProPublica has been responsible for projects like Dollars for Docs that publicly reports how industry dollars reach physicians, as well as nursing homes' interactive data that allows patients to find report cards on nursing homes more easily. In essence, the journalist's vision is to provide information directly to consumers so they can make more informed decisions on their own. Gallagher of the Cochrane Collaboration, and Frank of PCORI, argued on their panel that decision-making needs to happen jointly between doctors and patients, and that there might be new and faster ways of harnessing data to facilitate better decisions.
Other efforts to put patients in the center of healthcare reform are very early in their development: Kathleen Sebelius, Secretary of the Department of Health and Human Services, addressed the need to get patients to sign up for health care via the future health insurance exchanges in her plenary remarks. But how? She did not have an answer and implored the audience of researchers to help figure it out.
Photo: Hoag Levins
Tom Delbanco, MD, of Harvard Medical School, heads up the Open Notes project.
Tom Delbanco, MD, of Harvard Medical School, whose Open Notes experiment created buzz at the meeting, advocated for increased patient engagement in health by giving patients easy access to the notes their doctors write. But he pointed out that the idea is like a new type of medicine, with side-effects and contraindications. In other words, it's not for everyone -- doctors and patients alike may have reservations, and we still have to figure out its appropriate use.
The puzzle of engaging patients Taken as a whole, these tensions highlight the need to strike the right balance as we aim to better engage patients in their health. We don't yet know where the balance lies. Nor do we know about the intrinsic variation between patients or between doctors that will require different levels of engagement and different techniques to make it work.
However, one thing that clearly stood out at this AcademyHealth meeting was an incredible sense of optimism. Everyone believes that healthcare can be improved. Everyone is excited about the changes that they forecast for the next decade. Everyone believes that patients should be in the middle of that change. And everyone believes that we can create a coherent vision of what that blueprint will look like. We're just not there yet.
