Simply including family caregivers during daily inpatient rounds at the bedside provides the patient and family with deeper insight into the day ahead. This basic practice enables active participation and can begin a bidirectional communication that invites a caring partnership with the patient, family and professional caregivers.

This evolution is being driven largely by changes initially empathized in the Institute of Medicine’s 1998 report on health care quality, "Crossing the Quality Chasm," and more recently the Patient Protection and Affordable Care Act of 2010, which (along with other forces) mandates measurable emphasis on patient satisfaction and the results from patient surveys to dispense hundreds of millions of dollars in federal reimbursements to hospitals.

A concurrent increase in high-deductible health insurance plans is also contributing to this movement. As patients and their families become financially responsible for a greater portion of their medical costs, a new and increasing expectation for exemplary service and care is being informed by an unparalleled, on-demand customer experience in consumer industries like retail and travel.

As a result, today’s patients are more involved in their care, demanding a higher level of compassion and kindness alongside better quality. Increasingly, health leaders and institutions agree that going beyond just bedside interactions and, instead, engaging patients directly in the research and delivery of new standards of care is an effective way to ensure a higher degree of patient participation, satisfaction and, eventually, outcomes.

Understanding the “lived experiences” of the patient journey during hospitalization can help administrators and providers to better identify points of differentiation and areas for even greater improvement in the care they provide. A one-sided delivery mechanism predicated on what providers think is in the best interests of the patient carries with it a short shelf life in today’s complex health care system. These shifting sands beg the question: Whaty is the best way to enlist, engage and earn the trust of patients and their families in the process of delivering exceptional care?

Pioneering health systems are employing Patient and Family Advisory Councils as a way to capture vital patient perspectives and to democratize the delivery of care. These are not a passing fad nor light lip service in response to the shifting sands of health care regulation. It is estimated that more than 2,500 people are participating in more than 2,000 PFACs around the U.S. today. Done right, they can provide a deep and meaningful contribution to a hospital’s overall level of care and patient outcomes.

At Brigham and Women’s Hospital's Center for Patients and Families, we are actively using a system of PFACs based on the Institute for Patient and Family-Centered Care core values of dignity and respect, transparency, information sharing (to the extent that families of patients want to be included), and mutually beneficial relationships.

Our goal is to employ these PFACs beyond informing basic service improvements such as better food and facilities to influence gains in the actual delivery of care. This approach ultimately could elevate health care to the exemplary level of service seen in today’s purely consumer industries.

Based on nine years of actualizing this effort together with our patients and families, we have identified three best practices that could prove useful to other health systems and patients eager to explore the potential for hospital PFACs. 

1. Recruit and train 8 to 12 patient and family caregivers to create patient and family advisers

These advisers should represent a variety of patient types and family backgrounds to provide an accurate measure of the hospital’s practice areas. At Brigham and Women’s Hospital, this is an embedded process wherein advisers are initially recommended for candidacy by their care team members.

First, we conduct phone interviews to determine alignment between the potential adviser and the PFAC. For example, we want to determine whether they have spent time in a surgical unit or participated in a physical therapy program that they are being asked to assess and improve.

These dialogues are designed to help us better understand their patient journey, their perspective of what works and what doesn’t as well their ideas on how to improve and enhance the delivery of patient-centered care. The two most important questions are: “Tell us something that went wrong and what you would have preferred to have happened,” and “Give us honest advice on how we can improve our delivery of care.”

2. Establish specialized councils, avoiding a one-patient-fits-all mentality

Like our guidelines and standards, it is deeply ingrained in our health care system’s culture to assume that one group of highly engaged PFAs can address all areas of change. Through scaling our program, we’ve recognized firsthand that it is best to recruit a diverse range of patients suited to the individual initiatives or service lines underway within the hospital. This ensures that you have patient and family advisers with relevant histories and lived experiences for each program, and that they dedicate the time and attention required to support its advancement.

We are currently recruiting a PFAC to assist in our evaluation of alternative blood draw methods — the most common invasive procedure we, and all hospitals, conduct daily. More than 400 million blood draws are performed in U.S. hospitals every year, yet the process has not changed significantly in ages. We continue to use a needle to puncture a vein for a blood sample – often at 4 a.m., disturbing sleep that is instrumental to recovery and healing. We need a better way, one that reduces pain and anxiety for patients and eliminates risk for practitioners.

As a hospital, we had been studying a needle-free venous blood draw device from Velano Vascular. This patient-centered innovation aims to address the many shortcomings of blood draws, and more. During this discourse, and in the process of evaluating study data, we recognized that there exists a much greater opportunity to establish a completely new and more patient-centered standard for inpatient blood collection. Given the importance of a positive patient experience and endless feedback about this procedure, we decided to establish a PFAC to bring forward the patient and family caregivers’ narrative on repeat needlesticks, “pokes” and the “pincushion” so many hospitalized patients experience during a course of stay. By building a representative council with firsthand blood draw experiences, we will be better able to determine a new standard of care for blood collection.

3. Empower PFAs by embedding them within the hospital’s operational structure

At BWH, there are more than 85 patients and family members participating in PFACs that cover a wide range of issues, including LGBTQ health care, the ethics committee, emergency department, obstetrics, the neonatal intensive care unit, cardiac care and renal transplants. Each and every one of them is empowered to help us make a decision on quality of care or the patient experience. We have found that empowerment to be a key component of managing a successful PFAC program at our hospital.

Once you have identified, trained and engaged patient and family advisers, it is important to inspire them with both accountability and decision-making authority. At BWH, we give these advisers support from operational leadership and access to institutional resources, including ongoing training. Our chief nursing officer, chief medical officer and senior patient advisers regularly sit in leadership councils with patient and family advisers to obtain feedback and ask questions, and work collaboratively to identify opportunities for improvement. In this way, our patient advisers and ambassadors can be meaningful contributors to policy and process changes with involvement in operational decision-making, training staff on patient-centered initiatives and driving quality improvement projects.

Brigham and Women’s Hospital began with one PFAC representing the entire hospital in 2009. Today, we have 16 different operational councils and have seen more than 100 patients and caregivers rotate through our councils. The sheer volume of this program and the advances they have driven have made us better than we could have been on our own. We believe this is the future of patient-centered care.

Maureen Fagan, D.N.P., is the executive director for the Center for Patients and Families and associate chief nurse for OB-GYN at Brigham and Women’s Hospital in Boston.