Patient Engagement and Shared Decision Making: Is This the Moment?

August 19, 2013

Patient engagement is a hot topic in health care right now. Providers, regulators and health plans are all trying to figure out how to better involve patients in their own medical care. Shared decision making—a concept that grew out of Jack Wennberg’s work on regional variation in the use of health care services—is a tool that fits right into the patient engagement framework.

Jack and his colleagues have been studying variation in use of health care services for almost three decades. While there is some dispute about the extent of unwarranted variation in health care, there is little debate that it exists. Long ago, Jack categorized this unwarranted variation into two main groupings, “supply sensitive care” and “preference sensitive care.” Supply sensitive care is variation in use of medical care that seems to be related to the number of practitioners/facilities rather than the underlying medical needs of the patients. Preference sensitive care, by contrast, is care with alternative treatment approaches that are all acceptable from a clinical standpoint but that have different risks and benefits. For that type of care, the patient’s preferences should provide the guide to what treatment path should be followed.

Much of the debate about unwarranted variation in care centers around whether supply sensitive care exists and to what degree (we looked at this question ourselves at CHRT in an issue brief). But, no one debates the concept of preference sensitive care and the value of having patients better informed about their care options. And, many believe that too many treatment choices are based on physician rather than patient preferences.

To try to increase patient involvement in decision making about their own care, Jack and his colleagues formed the Informed Medical Decisions Foundation in the late 1980s. The foundation believed that both physicians and patients needed more tools if patients were going to be able to effectively engage in decisions about their care.

The foundation began by developing decision aids for patients to use in making decisions about certain types of conditions (back pain, benign prostate disease, breast cancer, cardiac care and the like). The idea was to enable patients to watch videos/DVDs to learn about the risks and benefits of various procedures so they could make a more informed decision about what treatment approach was right for them. The decision aids were to be used in partnership with clinicians so that decision making was shared.

Getting these decision aids out to patients and used in discussions with physicians proved to be a big challenge. The tools were somewhat expensive and difficult to distribute. Physicians perceived them as adding to their time rather than saving them time. The aids seemed to have the most success in highly structured medical settings, like staff model HMOs where there were support structures in place to help physicians work with patients. But, uptake was quite limited.

Fast forward to today where patient engagement is the watchword. Google “patient engagement” and you get 39 million results. Hospitals across the country have developed offices of family-centered care. The latest health care innovation grant request from the Centers for Medicare and Medicaid Innovation specifies shared decision making as one area of focus for project proposals. And, states like Washington have identified shared decision making as one approach to mitigate malpractice exposure. The idea seems to have taken hold such that the May 27, 2013, online issue of JAMA Internal Medicine ran five articles on the topic of shared decision making alone.

The interest in the topic shows that the foundation’s work over the past two decades may be having its moment. Perhaps dissemination of these tools and concepts will soon become an expected part of the patient/physician interaction and not an isolated event. Increasing patient autonomy in decision making is without question the right thing to do—how great it is that there seems to be a broader movement that might help bring that idea to reality.