The Rise of the Patient Voice

August 4, 2016 Reply


By Jan Walker, RN, MBA

Tom and I began working together in the early 1990’s. Tom had already been causing a stir. He had started one of the first hospital-based primary care teaching practices at Beth Israel Deaconess Medical Center (BIDMC) and was constantly examining ways to improve quality in care. Deep down in there, at the base of it all, was the understanding that the patient’s voice was largely missing from the discussion, and he wanted to change that. So with a grant from the Commonwealth Fund, Tom endeavored to find out what patients thought about hospitalization and the care they were receiving. I knew this was important work, and I joined his team.

Our collaboration led to opening the Picker Institute, a nonprofit dedicated to bringing voice to the patient experience. There, we developed a set of patient surveys that ultimately became the core of the Consumer Assessment of Healthcare Providers and Systems (CAHPS) surveys still used widely by Medicare and health care systems across the United States.

After our Picker Institute days, Tom and I briefly parted company to pursue other efforts. I went to Partners Healthcare, where I became intrigued by electronic health records and how they might transform care. Meanwhile, Tom turned his attention to medical error and understanding how errors are experienced by patients and their families.

Then, in late 2007, when electronic health records were proliferating and a few providers were setting up patient portals, we got back together to conduct a series of focus groups with consumers and clinicians, asking them what they thought computers could bring to health care. One of the takeaways was that patients really wanted their health records. That set us to thinking, and Tom came up with the idea of sharing visit notes with patients – rather than asking individual doctors to hand out individual notes, what we called OpenNotes would make them available on the computer. The internet was taking off, so the technology was available to leverage the idea and make it scalable.

Would OpenNotes create too much work for doctors? Would patients even be interested? We certainly didn’t know, but we found enough people who were intrigued by the idea that we decided to give it a try.

The Robert Wood Johnson Foundation (RWJF) liked the idea and agreed to fund a study exploring how opening the record might make it possible for patients to be more involved in their own care. When the first 105 primary care doctors opened their notes to their patients, the participating hospitals braced for the worst, expecting a deluge of calls. But the calls did not come. The doctors’ workloads were largely unchanged. The patients, however, were thrilled. 99 percent said they wanted OpenNotes to continue, and 70 percent said they felt more in control of their own health and health care.

A few short years later, 10 million patients in the United States can now access their notes securely, online. OpenNotes has truly become a movement, still supported by RWJF, but also joined by the Gordon and Betty Moore Foundation, the Peterson Center on Healthcare, and the Cambia Health Foundation. Together we believe that this kind of transparency not only has the power to engage patients much more actively and to make health care safer, it’s simply the right thing to do.

Tom and I will continue to work toward OpenNotes becoming the standard of care for all patients and we’ll continue to explore the big questions, all with the basic understanding that the patient’s voice matters and that putting patients and clinicians on the same page will help transform communication and improve the way we collectively manage health and illness.

Isn’t that what we all want?


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