Patient Engagement
Capturing the Patient Voice

A Patient and Family Advisory Council for Quality: Making Its Voice Heard at Memorial Sloan Kettering Cancer Center

Article · October 12, 2017

The concept of “high-quality, patient-centered care” has been widely embraced by both patients and health care organization staff. Yet, despite best intentions, it can be challenging to know if the care that an institution provides measures up.

One strategy for supporting value-based care is to establish a patient and family advisory council (PFAC), a group of strongly motivated patients, family members and other caregivers, as well as staff, who apply firsthand knowledge to improving the experiences of other patients and caregivers. PFACs have tremendous potential not only to enhance patient care but to align with an organization’s broader goals and vision. However, harnessing the altruism of individuals willing to serve on a PFAC and translating it into effective programs requires appropriate leadership and institutional support, including resources. Too often after initial excitement and fanfare, PFACs are underused and undervalued.

In 2015, Memorial Sloan Kettering Cancer Center (MSK) established its PFAC for Quality (PFACQ), with an explicit focus on quality of care. The mission statement, authored by the council itself, was to “integrate the patient, family, and caregiver perspective into every aspect of MSK’s efforts to prevent, diagnose, treat and cure cancer.” By 18 months, PFACQ advisors had served on 16 hospital committees; participated in 11 root cause analyses and patient-centered grant reviews; attended hospital-wide retreats; presented to physicians, nurses, and other employees; and contributed to 17 quality improvement projects originating within the institution. The PFACQ also initiated several of its own projects.

What is it about MSK’s PFAC model that has engendered such deep, authentic, and impactful involvement by patients and caregivers? And what advantages can an invested and highly productive group give an institution in an increasingly competitive and rapidly changing health care environment? We attribute our PFACQ’s effectiveness to several factors — the diversity of its membership, institutional transparency, and MSK’s openness to patient-driven ideas, among others — that we present for consideration by other health care organizations seeking to establish, or to refine the governance and operation of, their own councils.

Institutional Readiness

Prior to founding the PFACQ, MSK was primed for patient and family involvement. A new physician-in-chief had established the Division of Quality and Safety (DQS), led by a physician who had witnessed the power of patient advocacy during the early years of the HIV epidemic. MSK was deeply committed to improving the quality, safety, and patient-centeredness of care, having recruited patient advisors in several critical roles, including on standing committees on ethics and quality. Establishing a PFAC was the natural next step.

A Patient and Family Advisory Council (PFAC) for Quality

  Click To Enlarge.

To ensure success, DQS assigned to the fledging group a colorectal surgeon charged with clinical care transformation, a DQS administrative staff person, and other staff, including a full-time manager to help with scheduling, presentations, research, and other tasks. This tangible up-front commitment — along with openness to the possibility that a PFAC might challenge established views in areas such as informed consent or disclosure of medical errors — helped forge the trust between the PFACQ and MSK leadership that would be necessary for carrying out work routinely requiring objectivity, sensitivity, and a strong collaborative spirit.

Governance and Recruitment

To learn how other institutions developed and used PFACs and to identify best practices, DQS staff and the eventual chair of the PFACQ interviewed PFAC chairs at peer institutions. We found that most PFACs were composed of 10 to 20 advisors with a wide range of backgrounds and experiences. They met monthly and participated in several types of projects and committees.

We also uncovered different leadership structures. To promote independence, MSK leadership decided that only patients would chair the PFACQ; MSK staff would be invited to participate but not lead. This signaled institutional confidence in the PFACQ, as well as the recognition that although MSK clinicians are experts at chemotherapy, radiation, and surgery, PFACQ advisors are experts at being patients and caregivers.

In the same spirit of independence, the group developed its own governance structure, including its membership, term limits, and elections. It determined that the PFACQ would be composed of 13 patient advisors, four caregiver advisors, and five MSK senior staff members from areas that included nursing, medical staff, patient representation, and administration. Patient and caregiver members were chosen through interviews conducted by the chair, surgeon, and manager, while staff members were identified and invited to join following discussions between the chair and surgeon. MSK’s Department of Volunteer Resources provided recruitment assistance. After approximately six months of planning, the PFACQ officially began its duties in May 2015.

PFACQ meetings are held monthly (although project-based subcommittees may meet more often) and are structured to maintain focus on the patient’s perspective. Senior MSK representatives authorized to make substantive institutional changes attend these meetings to help expedite initiatives. They respond to questions and contribute to discussions, but they do not set the agenda. Some presentations are made by PFACQ members and others are delivered by invited MSK staff. The latter are brief and focus on problem-solving, generating discussion, and gaining meaningful patient-family input from the council. Examples include updates on the electronic patient portal, opportunities for PFACQ involvement in MSK’s growing Integrative Medicine Service, and an overview of the care model followed at MSK regional outpatient sites. To further steep the MSK culture in patient-centered care, chairs of departmental quality assurance (QA) committees attend meetings on a rotating basis.

An unexpected outcome of the meetings has been the enthusiastic response of MSK staff members. As one administrator put it, “I do not work directly with, talk to, or partner with patients/caregivers on a routine basis. It means so much to be a member of a group of patients, caregivers, and coworkers who are sounding boards, champions, devil’s advocates, and coaches — all working together to push the envelope of what it means to provide exceptional care to our patients.”

Another powerful asset for the PFACQ is the diversity of its volunteer patient and caregiver membership. Patient advisors come to the council from all points in care — from active treatment to survivorship. They include the young and old, people from varied demographic and geographic backgrounds, and patients with different cancer types treated by various modalities. The caregiver group is similarly diverse with partners, children, and parents volunteering time and energy.

By augmenting diversity with the group’s freedom to choose its leaders and match them with staff partners, the PFACQ can leverage professional skills — among them, familiarity with insurance companies, legal expertise, and media experience — and unique personal experiences to enhance its partnership with MSK. Similarly, MSK staff members on the PFACQ can identify allies, move agendas forward, navigate through the institution, and forge close-working relationships.

As a whole, the autonomous governance and recruitment practices of the PFACQ have been instrumental in imbuing the group with a sense of empowerment and trust, which has, in turn, fostered innovative thinking and bolstered the members’ dedication to optimizing the patient-centeredness of care and the patient experience.

Institutional Support

The robust infrastructure and institutional resources provided by MSK strengthen the council by allowing it to become deeply embedded into the organizational culture. We now receive weekly calls from many committees and initiative leaders throughout the institution requesting participation of a PFACQ member — so much so that demand has begun to outstrip supply, as PFACQ members participate in every departmental QA committee and many other activities. In fact, specific comments on new initiatives are now routinely “run by” a PFACQ member.

Budgetary support for the PFACQ is provided through the DQS, which monitors the quality of advisor-committee relationships and provides opportunities for PFACQ members to speak to clinical departments and to groups, including the medical board, to spread awareness of its work. The DQS also provides all PFACQ committee members with staff mentors. MSK provides advisors with resources for holding productive discussions with physicians, and it promotes member education by facilitating unfettered access to local clinical experts. These efforts by MSK leadership help PFACQ members become informed, confident project participants.

While the PFACQ relies on strong institutional support, its independent voice remains protected, thanks to council leaders who are deeply familiar with the dynamics of organizational behavior (the current chair has an MBA from Harvard Business School) and who have garnered the full respect of MSK’s administration. The PFACQ chair’s monthly updates to the MSK Hospital Quality Assessment Committee and presentations to senior leadership keep institutional stakeholders informed and involved.

Determining which project can benefit from PFACQ member participation is an iterative process. Importantly, PFACQ participation never serves as “window dressing” to allow a team to say that a plan has been “OK’d by the PFACQ.” Rather, we involve members in project development early on, so that skills, time, and effort of PFACQ members are used optimally. This respect of time and talent also signals to members that their contributions matter.

Transparency

Ensuring transparency is important in affirming mutual trust between the PFACQ and MSK leadership. MSK demonstrated this trust during the PFACQ’s early months by including a member on each hospital root cause analysis (RCA). RCAs are conducted to determine the cause of a patient’s unexpectedly poor outcome. Advisor participation ensures the presence of the patient/family perspective.

Since RCAs require the utmost professionalism and discretion, the PFACQ chair will identify the most appropriate advisor, who is then mentored closely by DQS members. Prior to participating in RCAs (or any clinical committee work) advisors receive extensive training on HIPAA to improve their personal awareness of patient privacy. Once trained, most advisors, themselves patients and caregivers, are relieved at how seriously the institution takes the protection of clinical information.

Including PFACQ members in RCAs has been one of the largest “wins” in the program thus far. Patients and caregivers are able to consistently demonstrate the importance of their perspectives to the case examination and make substantial contributions at every review. In turn, advisors are impressed with MSK’s efforts to create positive changes, and they can better understand the complexities of providing patient-centered quality care.

New PFACQ Initiatives

In addition to supporting institutional priorities, the council is encouraged by MSK to initiate and lead quality improvement projects salient to its members. Watching ideas become programs invigorates the group and reinforces an open-ended dialogue on optimizing the patient and family experience, illustrating what one advisor has praised as “the importance [MSK] places on the role of patients and caregivers in fulfilling the mission to provide transformative care and generate transformative knowledge.”

In response to the invitation, the PFACQ identified several points of transition in care as critical opportunities for improvement:

  • The “New Patient Experience” subcommittee provides new patients with the opportunity to talk with an experienced patient prior to their first medical visit for support and guidance.
  • The “Transition from Active Treatment to Surveillance” subcommittee focuses on the “in-between” period when the intense care, attention, and concern provided during active treatment are replaced with infrequent visits and confusion about whom to call with questions.
  • The “End of Life” subcommittee examines the quality of communication occurring among patients, families, and providers around palliation, supportive care, and the evolving goals of care for patients with end-stage disease.

As it matures, the PFACQ will continue to seek ways to improve its impact and efficacy, such as by increasing its visibility, leveraging data, refining recruitment and training practices, growing the size and diversity of its membership, and developing new resources (e.g., creating a database of advisor experts and a public website).

Conclusion

Within a remarkably short period, the PFACQ has advanced patient-centeredness to the forefront of care delivery at MSK and is now an indispensable resource when programs affecting patient quality of life are evaluated. Stated simply, the PFACQ has evolved from an idea to an institutional necessity.

We believe that the PFACQ’s key strength — its ability to fill in the gaps between clinicians’ conceptions of patient care and what patients and families think of as critical considerations — is a quality that would allow other PFACs to become catalysts for optimizing patient-centered care in their own health care institutions.

 

This article originally appeared in NEJM Catalyst on December 7, 2016.

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