The health care industry, in frequently failing to form partnerships with patients and families, is squandering opportunities to both improve care and lower costs, and it lags behind industries that have already found ways to learn from their customers, improve the quality of their services and lower spending.
I’m a physician, but I first learned this painful lesson when my mother died of an untreated systemic infection in an out-of-state hospital. The experience that I write about is in this month’s issue of Health Affairs. Although I was shocked as I witnessed multiple errors, I was equally surprised by how difficult it was afterward to partner with the hospital where she died to help transform its level of safety. When the two choices available to me — suing the hospital or writing a letter of complaint — proved to be imperfect options with uncertain outcomes, I started looking for new partnering models to bring patients, families and hospitals together to make health care safer.
In my search, I discovered trailblazing hospitals and clinics scattered throughout the country that were pioneering new patient and family partnerships, improving safety and, in the process, transforming how health care was delivered. Although the programs vary, they share common approaches. First, they engage all patients and family members more integrally in their own care. For instance, in many centers patient rounds among nurses and physicians, which traditionally occurred outside a patient’s room, have been moved to the patient’s bedside. Now, patients, together with their families, can add information, ask critical questions, or voice concerns as health care providers discuss the patient’s daily treatment plan.
Second, these innovative hospitals and clinics recruit and train cadres of “expert patients” and “expert family members” to provide them with important counsel. Patients and family members apply for these positions and are selected for their thoughtfulness, empathy and ability to voice their views constructively. Then, they combine their personal experiences with training on the administrative functioning of the hospital. These patient and family member experts are then deployed to participate on hospital committees, including patient and family advisory councils that help hospital departments and programs tackle their greatest challenges. In Massachusetts, where I practice, all hospitals are required to have these councils. I’ve watched some of these advisory groups in action, and I’ve seen patients and family members give fresh perspectives and ideas that, as a physician, I would have never considered.
Congress can play a critical role in promoting patient and family-centered health care. The new health care delivery models created by the Affordable Care Act are changing the way we deliver health care services. These models — like patient-centered medical homes and accountable care organizations — are designed around the needs of the patient and anchored in primary care. These models have the potential to improve the care patients receive and lower health care spending by preventing unnecessary hospitalizations, readmissions, and even poor quality care. And one of the central components of these models is the patient. For instance, the new Pioneer ACOs are actually required to include a patient and a consumer advocate on their governing body and will also be rewarded or penalized based in part on their ability to provide genuine patient-centered care.