Bringing Patients Into the Patient-Centered Medical Home

Why Start a Primary Care Patient Advisory Council?

In 2012, the UNC Family Medicine Center created one of the first ambulatory care–based PACs in a traditional practice. The foundation of this initiative was a moral conviction to share ownership of health care with patients and their families. Clinically, emphasizing patient self-management and shared decision making has been at the heart of family medicine for a generation. In addition, the first chair of our PAC (H.A.) had previously participated in a hospital patient advisory group; another of the authors (W.P.N.) had practiced for 3 years in a community health center where patients served on the practice board; and a third author (M.G.) participated on the board of a critical access hospital where the voices of patient board members were critical to operational and financial decisions. Beyond these considerations, however, we were looking for more: we wanted patients as partners.

It was clear that we needed the patient perspective to help guide the evolution of our practice. There have been persistent calls for dramatic changes in the model of primary care—from reports by the National Academy of Medicine [3, 4], from the Future of Family Medicine report [1], and from the Joint Statement on the Patient Centered Medical Home [5]. Following these leads, the UNC Family Medicine Center implemented advanced access [6, 7], designed new coordinated systems of care for chronic disease (including diabetes and congestive heart failure) [8, 9], and began to systematically address tobacco use in our practice [10, 11]. We obtained and renewed PCMH recognition [12], embedded social work care management [13], launched a new home-based care service, implemented interventions to reduce hospital readmissions, and built a regional system of care for uninsured patients in collaboration with partners in the UNC Health Care System [14], Piedmont Health Services, and Community Care of Central Carolina.

The outcomes of these interventions have been positive, with improvement in patient satisfaction, improvement in quality of care for chronic diseases, reduction in health care utilization (including a 37% reduction in hospitalizations for our patients with congestive heart failure), and continued rapid growth of our practice. After much review, however, we came to the conclusion that, in order to continue to progress, we needed to make further dramatic changes in our practice, including a major renovation and expansion of our clinical facility, transition to a new electronic health record system, and the implementation of a Lean approach to leading and sustaining practice improvement. Given this rapidly changing environment in which many different interventions would be implemented, we realized we had a unique opportunity to engage our patients more formally and to seek their guidance in the evolution of our practice.

Who Are the Patients on the Patient Advisory Council?

Our intent was that the PAC would be representative of our widely diverse patients and would be committed to contributing broadly regarding the care of specific diseases. Given our broad scope of practice, we wanted to include representatives of the young families in our practice, the many adults with either chronic diseases or urgent care needs, and the patients who are very sick and who use our hospital regularly. Given our racial and ethnic patient mix, it was also important that there be racial balance as well.

In practice, we have been able to achieve our overall goals, but there have been some challenges. For example, it has been difficult to engage young families, as they have busy lives and responsibilities for managing young children. In contrast, those who are retired have more time and likely more experience in health care. We embrace prior health care experience in potential PAC members but also value members who lack this experience. Given the role we have asked of our patients and the relative youth of the council, we have found in launching the PAC that it has been important to have members with experience in developing boards and in management of health care.

What Impact Has the Patient Advisory Council Had on Our Practice?

The PAC has played a major role in helping our practice evolve. In terms of organizational impact, one of the PAC's first initiatives was to improve the signage in our 25,000 square-foot facility. They have emphasized the importance of communications, both generally—in terms of the resources available for answering phone calls and messages rapidly—and relating to specific issues, such as the phone tree for parents of young children. With respect to our renovation and redesign initiative, PAC members led a significant shift in our architectural blueprints; the patient, they insisted, should be at the center of care, with services like registration, blood draw, and referral coordination brought to the patient in the exam room, rather than the patient going to the services.

These substantive changes in the organization are only part of the impact the PAC has had on our organization. As documented in many of the articles in this issue, patients change the conversation just by being at the table. As our medical director commented, when faced with an operational or financial challenge in the practice, he finds himself asking what members of the PAC would say, and he frequently takes inquiries directly to them.

Our PAC has also had a significant impact on our academic mission. In addition to interacting with occasional students and residents, PAC members have played a direct role in providing input on clinical research. For example, one of our faculty clinician researchers was interested in addressing patients' perspectives on the value of tight control of type II diabetes, given the trade-off between possible benefits and significant side effects. PAC input, as well as their governance role in our practice, helped us win this grant, which was one of the first PCORI grants funded at the University of North Carolina at Chapel Hill. Another researcher came to the PAC for input on patient choices in screening mammography, which has become much more controversial in recent years. PAC members' input not only contributed to a research submission but also influenced a major review and adjustment in the UNC Health Care System clinical protocols.

What Is the Future Agenda of the Patient Advisory Council?

We believe that the UNC Family Medicine PAC is now well established and is ready to move into a new phase of engagement. Applications for new positions on the council have increased sharply, from 18 to over 90, and new leaders have developed a broad agenda. In addition to the ongoing and substantial work with renovation and redesign of our clinical facility, the PAC members and the leadership of the Family Medicine Center have identified significant new areas for work. As a part of Lean redesign, we have launched new approaches to hiring and developing office staff, and PAC members are interested in playing a significant role in this process, including participating in hiring of staff and orienting them to patient-centered values. Second, a year after implementing our new electronic medical record system, we now want to take better advantage of its patient portal. This is a potentially powerful tool to enhance communication and coordination of care; our hope is to use it to close gaps in preventive and chronic disease care. We will need ongoing input from patients to do this effectively. Finally, as insurers begin to pay for value rather than for volume of services provided, we need patients to help us develop programs that feel right to them. We want patients to help drive our assessment of what constitutes value and to engage them in the organization of their own care.