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.

Tom Delbanco, MD, MACP, is Koplow-Tullis Professor of Medicine at Harvard Medical School, Beth Israel Deaconess Medical Center. He is an alumnus of the Robert Wood Johnson Foundation Health Policy Fellows program.

In a recent blog post, Anjali Gopalan, MD, a Robert Wood Johnson Foundation Clinical Scholar, weighed the pros and cons of OpenNotes—an effort to share clinicians’ notes with patients that is a stimulating collaboration among a large group of investigators, practitioners and patients in Boston; Danville, Pennsylvania; and Seattle.

Dr. Gopalan made a number of insightful observations that I’d like to comment on, but I need first to correct a fundamental misperception: OpenNotes is decidedly not a software program!!!

OpenNotes is an effort to convince patients, families, and clinicians to share openly any and, most often, all material that pertains to a patient’s care. The goal of such action is to improve communication between clinicians and patients, and to help patients engage more actively in managing their health and health care.

OpenNotes doesn’t depend on electronic health records or other software. Purely and simply, we are suggesting to patients that they routinely ask for a copy of their providers’ notes (to which they are legally entitled through HIPAA). And we are suggesting to clinicians that they routinely invite their patients to read them. Pull down the invisible firewall that we clinicians have long established, and the patient (and others whom he or she wishes to involve) can view the thinking that leads us to conclusions and recommendations.

To be sure, patient portals can facilitate sharing information with patients, and their future potential is enormous. But unblinding the story, the warp and woof of an individual’s experience that’s documented in clinicians’ notes, can also be done by low-tech means such as providing print copies of the notes at the end of a visit or later by mail.

Anjali Gopalan, 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.

Propelled by a highly publicized study funded by a $1.4 million grant from the Robert Wood Johnson Foundation, OpenNotes software has created quite a stir in the world of health care reform since 2010. Its high-profile testing paralleled the rise of the Affordable Care Act and the new emphasis that law puts on the computerization of virtually every part of medicine, including the doctor-patient relationship itself.

OpenNotes is a digital tool with which a physician takes and stores the notes of every encounter with a patient. The new aspect of OpenNotes that has drawn so much attention in the press and professional venues like the AcademyHealth National Health Policy Conference is its ability to provide patients instant access to everything the doctor writes about them.

Subject of Much Debate

The question of how this new kind of doctor-patient information collaboration might ultimately affect either party remains the subject of much debate. The conference session that focused on it was entitled "Stirring It Up: Putting Patients in the Middle" and featured Tom Delbanco, MD, the Harvard Medical School professor who is leading the national OpenNotes development and implementation effort.

Dominick L. Frosch, PhD, is an alumnus of the Robert Wood Johnson Foundation (RWJF) Health & Society Scholars program, and the recipient of an RWJF Investigator Award in Health Policy Research. He is an associate investigator at the Department of Health Services Research at the Palo Alto Medical Foundation Research Institute, and associate professor of medicine at the University of California, Los Angeles. Frosch recently led a study, published in Health Affairs, which examined the reasons patients are reluctant to engage in shared decision making. This post is part of a series on the RWJF Health & Society Scholars program, running in conjunction with the program’s tenth anniversary. The RWJF Health & Society Scholars program is designed to build the nation’s capacity for research, leadership and policy change to address the multiple determinants of population health.

Human Capital Blog: Why did you decide to look at this issue?

Dominick Frosch: The role of patients is really changing and, especially over the last decade, we’ve seen a growing emphasis on patient participation in clinical decision making. It’s especially prominent in what we call preference-sensitive care, where patients have multiple potential options for treatment, but the evidence doesn’t identify a clear, superior choice. Making a decision in these cases involves considering the trade-offs between benefits and risks. There’s growing emphasis that patients should have a role to play in these preference-sensitive situations because they have to live with the outcomes of the care they receive.

Until now, we have implicitly assumed that providing patients with information is sufficient to facilitate shared decision making. In reality we know quite little about how patients perceive the communication tasks that are necessary for shared decision making to happen in a clinical consultation, and our objective with this study was to develop a better understanding of that.

By Jennifer L. Wolff, PhD, and Robert Wood Johnson Foundation Physician Faculty Scholar Cynthia M. Boyd, MD, MPH

It is widely recognized that family members and trusted friends make an enormous difference by assisting disabled older adults with daily household and personal activities. There is less awareness, however, that families and trusted friends also often help older adults navigate our complex and fragmented health care system to get the best care possible—by scheduling and arranging transportation to appointments, engaging in medical decision-making, or overseeing adherence to health care treatments. As we learn more about how older adults navigate the health system, it is becoming clear that they often do so with the support and active engagement of a “family companion” —and that this role is enduring.

In a study we published in the January issue of the Journal of the American Geriatrics Society (JAGS), we found that nearly one-third of adults over age 65 were accompanied by what we called a “family companion” during routine physician visits. These companions were almost always family members (93.3 percent), and they typically accompanied their loved one to physician visits on a regular basis—70.3 percent were identified as “always” present.

We were surprised by the persistence and consistency of family companion involvement. Three quarters (74.5 percent) of older adults continued to be accompanied by a companion at one year follow-up, nearly always the same family companion (87.1 percent).