Nothing About Patients Without Patients: More Than Just a Catchphrase!

Abstract

Health care is sometimes called a "team sport," yet patients were traditionally not considered to be "on the team" in medicine. In 2001, the Institute of Medicine (now National Academy of Medicine) published its seminal book Crossing the Quality Chasm, in which patient-centered care was identified as 1 of 6 quality aims. Many organizations have since included patient-centered care as an important aspect of quality, including The Joint Commission, Centers for Medicare and Medicaid, and many large employers. In the past 10 years, the focus on patient-centered care has expanded in the Kaiser Permanente, Southern California region to include innovative ways for patients to collaborate with health care teams to codesign improvement efforts that are truly patient-centered. We will describe 3 important approaches that have greatly increased the patient-centeredness of our organization: individual patient approaches; adding patients onto health care teams; and effectively utilizing patient and family advisory councils. We will provide examples of how all health care organizations can better partner with their patients to improve their ability to provide higher quality, safer, more equitable, and affordable health care. The slogan "Nothing About Patients Without Patients" was an early rallying cry of the patient engagement movement. It conveyed the idea that as with everything else in our society, patients now expect to have a say in the design and implementation of their care. We show that this is not only possible, but also highly effective and even necessary to improving care.