Let patients speak for themselves on the Biden task force and elsewhere

Ever since President-elect Biden named his Covid-19 task force, advice for improving its makeup has poured in from all quarters. A recent op-ed by two nurses chided Biden to add a nurse to the task force in part because nurses “give voice to patients.”

As a cancer survivor and patient, I have my own voice. So do the millions of patients around the country, whose voices have often been co-opted in national debates and policy forums by nurses, doctors, and others speaking for us.

The Covid-19 task force is an important step in addressing the challenging issues of the coronavirus pandemic. Including experts in public health, physicians, nurses, academics, and commissioners is essential to understanding all perspectives and developing the best plan to move forward. But it doesn’t include a representative from arguably the most important group of health care experts: patients.

Listening to them and knowing what matters most to them is critical when determining how to proceed, rather than others making decisions on their behalf.

I co-lead the Patient Experience Policy Forum in partnership with Rick Evans, the chief experience officer at NewYork-Presbyterian. This group was formed as a two-by-two model in which patient/family leaders and health care leaders work side by side as equal partners because we believe it is essential to understand all perspectives when making policy decisions. Our coalition includes leaders who have dedicated their time to sharing their perspectives and helping improve the patient experience along with patient experience officers and health care executives from hospital organizations across the country.

Patient leaders are engaged by many health care organizations across the country to improve health care to provide insight into what is most important to patients. Partnership and shared decision-making have been shown to correlate with improved quality and safety outcomes, especially when patients are involved in the process from the very beginning. Truly understanding what is important to patients and families, and including their perspectives, is critical to the success of any health care initiative.

Michael Bennick, a physician at Yale New Haven Hospital and board member of the Patient Experience Policy Forum, often describes his patients as experts. “There are two experts in the exam room: me with my scientific knowledge and the patient who knows what is best for themselves and what is important. We have several patient family advisory councils at Yale New Haven Hospital and one at each of our delivery networks. They are fundamental to the work we do.”

There is no greater champion for improved care, or no advocate for the experience of care, than those who need it or have needed it. Biden’s Covid-19 task force should include the direct voice of patient/family leaders who understand what matters most to those receiving care for Covid-19 or who stand to gain from protective efforts against it. They understand the concerns of patients and families, the barriers they must surmount to access care, and what is most important to them as we all strive for the best outcomes.

The Covid-19 task force has been charged with many objectives, including how to help communities navigate these uncertain times as well as ensuring the equitable distribution of vaccines and treatments. It is essential underserved communities are engaged, especially when distrust and health disparities seem to be at an all-time high among Black and Latino communities. People of color have disproportionately been affected by Covid-19, and their voices should be heard directly to understand what will help them feel safe and cared for in this environment.

Vaccine concerns cut across all socioeconomic and ethnic groups, and who better to engage communities than leaders who understand because they have experienced and lived these concerns directly?

The task force has many action items that would benefit from the contributions and input of patients and family membership. It can serve as an example for how the voices of patients and family members are essential to all we do in health care.

The voice of patients and families is all too often missing from the conversation — especially now as we face the most challenging health crisis of our time. I urge President-elect Biden to include a patient/family leader as part of the Covid-19 team. Including all perspectives makes it possible to identify and achieve common goals and ensure the most comprehensive vision for the outcomes we all aim to achieve.

Shari Berman is a patient leader and co-chair of the Patient Experience Policy Forum, a diverse coalition supported by The Beryl Institute that advocates for policies that positively affect patient and family experiences in health care.