‘Patient-Centered’ Medicine and Health Care Reform: Optimistic Visions Without A Coherent Blueprint
Benjamin Roman, MD, is a Robert Wood Johnson Foundation (RWJF) Clinical Scholar in residence at the University of Pennsylvania and a senior fellow at the Leonard Davis Institute of Health Economics. This is part of a series of essays, reprinted from the Leonard Davis Institute of Health Economics’ eMagazine, in which scholars who attended the recent AcademyHealth National Health Policy Conference reflect on the experience.
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 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 health care 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.
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 efforts of the Department of Veterans Affairs and of Medicare 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 a 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,” and rely on their doctors to tell them what they should do.
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, which 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 the Patient-Centered Outcomes Research Institute, 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 health care 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.
Tom Delbanco, MD, of Harvard Medical School, whose OpenNotes 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 health care 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.
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Reprinted from the Leonard Davis Institute of Health Economics' eMagazine.