The drive toward value-based care is requiring the healthcare industry to make a 180-degree turn from where we were just a few years ago. We’re moving away from a system focused on treating sickness to one that strives for wellness; from encouraging volume to demanding value; from filling beds to penalizing readmissions; and finally, from a system centered on the provider to one that rightfully revolves around the patient.
This new environment demands care that places the patient’s needs at the forefront. One area where this patient-centered approach is sorely lacking is measure sets. The majority of measures used today are process-based and understandably focus on whether clinicians adhere to established standards of care. But an overabundance of these measures shifts the care team’s focus away from patient-centered care and outcomes and instead has them concentrating on complying with the processes.
To keep patients at the center, we must also have condition-specific outcomes measures that patients care about. Developing these measure sets requires consensus and shared decision-making between patients and providers, and there are some inspiring examples of this in action. Perhaps the most ambitious effort is being spearheaded by the International Consortium for Health Outcomes Measurement (ICHOM), which has assembled multidisciplinary international working groups of providers and patients to develop patient-centered outcome measure sets for all medical conditions.
Similarly, Texas MD Anderson Cancer Center has developed disease-specific, patient-centered outcome measure sets that are partly based on feedback from patient focus groups. One thing they heard loud and clear: patients don’t really understand the concept of “outcomes,” and are primarily concerned about their quality of life during and after treatment. Will they get their full range of motion back? Can they work and take care of their families? Will they be able to enjoy summer cookouts? Will they still be healthy in five years? Twenty years? As a result, one of the outcome measures the group developed for breast cancer was “Return to Normal Activities of Daily Living.”
This is just one example of how we must keep patients at the center of care by actively seeking and heeding their opinions and preferences. Don Berwick often says, “nothing about me without me” when talking about how the needs of the patient come first. Nowhere is this more important than in the creation of outcomes measures, which are the compass that often navigates patient care. When patients are firmly established as the “true north” of this compass, only then can they truly help to guide their own journey.