My epiphany on patient/family* engagement occurred in 2005. I had read the evidence-based support for the relationship between patient engagement and clinical outcomes. My job was at the organizational level, setting policy and practices to improve patient safety in a large health system which included multiple hospitals and clinics. I had read articles about patient advisory councils, where patients contributed their opinion and recommendations to health care organizations based on their personal experiences. But I was skeptical that patients’ input into the complex system of health care could positively influence outcomes. So, we decided to study and ‘prove’ that patient engagement at the organizational level can have an impact.
During a two year research project, we established a patient advisory council that included patients and family members as well as doctors, nurses and pharmacists, all of whom received or provided care at one of our hospitals or clinics. Our goal was improve medication safety, using patient engagement interventions developed by the Council. Simply, we were asking our own patients to tell us how best to engage them in managing their medications. From the first day, I was acutely aware of the perspective differences between patients and providers- and the critical knowledge that each brings to the bedside. During an exercise where each of us shared our personal experience of medication issues, the patient stories -of managing complex regimens prescribed by multiple doctors, dispensed at a variety of pharmacies, paid for by various entities, with no single consistent documentation- mirrored the frustrations and barriers faced by providers. We were exacerbating the problem by ‘blaming’ the other side, instead of understanding each others’ perspective. It was clear that we had to learn how to work as a team.
Our project was a success; the data satisfied my analytical side. More relevant, the experience influenced the value I place on patient engagement at every level of the health care system. As with any effective team, there are essential elements for success. We need a common goal, a compelling direction, agreed upon by the patient and provider. We need a common language, so both understand the clinical as well as the system issues that contribute to the situation. We need to clarify roles, recognizing that both the patient and the provider are knowledge experts in their interdependent roles. We need training and support for patients and providers to communicate effectively through which we will improve information sharing, overcome our mutual ‘fear’ of transparency and develop trust. We need structures, such as Patient Advisory Councils, that support these collaboratives where doctors/ nurses/hospitals can listen and patients can inform, based on their experiential knowledge. And we need interventions that are feasible for and meet the needs of both the patient and providers.
Whether at the bedside or at a corporate meeting, patient and family engagement needs to be developed into an effective team. It starts with an invitation and willingness to work together. It is successful when ‘nothing about me without me’ is the basic ground rule.
*The term patient engagement is used throughout this essay but patient and family is always implied.
Kathy Leonhardt, MD, MPH, is Vice President, Patient Experience/Patient Safety, Aurora Health Care, Wisconsin