Patient and Family Advisory Councils

 

The Massachusetts Experience

By Deborah Wachenheim, BS, MPP

Patient and family advisory councils (PFAC) are groups of patients, family members, community members, and hospital staff who work together to bring the unique perspectives of patients and families to a hospital’s operations, especially its efforts to improve care. According to one estimate, more than 2,000 hospitals in the United States have PFACs. They are also slowly becoming more common in outpatient settings.

Massachusetts is the only state that mandates all hospitals (acute care, rehabilitation, and long-term acute care) to have a PFAC. This requirement became law in 2008; all hospitals had to have a council in place by October 2010.

At this five-year anniversary, it is appropriate to review how the mandate came about; how the implementation process has gone; what PFACs in Massachusetts are doing now; and what other states, healthcare organization, and consumer advocacy groups can learn from the Massachusetts experience.

Grassroots efforts and legislative success

Health Care For All (HCFA) is a statewide consumer health advocacy organization based in Boston. Its mission is to “create a healthcare system that provides comprehensive, affordable, accessible, and culturally competent care to everyone, especially the most vulnerable. HCFA achieves this as leaders in public policy, advocacy, education and service to consumers across Massachusetts” (Health Care For All, n.d.).

In 2006, six months after the enactment of Massachusetts’ health reform law, HCFA created the Consumer Health Quality Council (Consumer Council). HCFA and others knew that quality improvement and cost containment, both of which were minimally addressed in the law, would be included in later waves of reform. The Consumer Council was established to enable healthcare consumers to advocate for better-quality healthcare across the Commonwealth.

The Consumer Council’s members were volunteers, most of whom had had difficult experiences with the healthcare system, either in their own care or that of a loved one. These individuals felt ready emotionally to tell their stories in order to improve the quality of healthcare provided to Massachusetts residents.

Most of the experiences that motivated these volunteers happened in hospitals. Ginny, for example, went to a hospital for simple ankle surgery and got an infection that continues to cause her health problems many years later. Lucilia’s father died from an infection he contracted during surgery. Marla’s breast cancer diagnosis was delayed, in part because of her young age, and required extensive treatment once it was properly diagnosed. These are a just a few examples, but all the volunteers shared a desire to prevent what happened to them from happening to someone else.

The Consumer Council started meeting in the fall of 2006, a few months before the beginning of the Massachusetts legislative cycle in January of 2007. Council members spent those first months brainstorming and drafting legislation. They discussed initiatives in other states they wanted to implement in Massachusetts (public reporting of infection rates in hospitals, public reporting of the National Quality Forum’s Serious Reportable Events [SRE] in hospitals, nonpayment for care needed following the occurrence of an SRE), common threads across their personal experiences that could be addressed through legislation (apology and disclosure following unanticipated medical outcomes), and new ideas based on what the group learned as it researched patient- and family-centered care in Massachusetts and nationally (PFACs, patient- and family-activated rapid response teams). The final version of the legislation included all of the items listed above. Identical bills were filed in the state Senate by Sen. Richard T. Moore from the Worcester area, and in the House by Rep. Denise Provost from Somerville.

The bills were referred to the legislature’s Committee on Public Health, and a public hearing took place late in spring 2007. Meanwhile, volunteers from the Consumer Council with HCFA staff members met with their own legislators and with members of the Public Health Committee to discuss the legislation and tell their stories. Volunteers provided public oral testimony during the committee hearing and also submitted written statements.

The legislation passed the Public Health Committee and then moved to the Health Care Financing Committee, co-chaired by Sen. Moore. In the meantime, the powerful Senate speaker, Therese Murray, introduced a large healthcare transparency/cost containment/quality improvement bill. It became apparent that if any healthcare bill was going to advance through the legislative process, it would be this one. Sen. Murray’s bill included some provisions from the Consumer Council’s bill: PFACs, rapid response teams, public reporting of infections and SREs, and nonpayment for care following SREs. Another public hearing took place relating to this larger bill, and again members of the Consumer Council provided oral and written testimony and met one on one with relevant members of the legislature.

In the summer of 2008, Sen. Murray’s bill, including the Consumer Council’s provisions, became law. Less than two years after its first meeting, the Consumer Council had achieved major legislative success! Throughout this process, there was minimal opposition to the PFAC mandate. One of the opposing arguments was that hospitals should not be forced to establish PFACs, but should establish them only when the organization’s culture was considered ready for true partnership with patients and families. While the Consumer Council understood this point, as consumers, they felt that many hospitals would not reach that state of readiness in the near future. Pushing them to do so would advance patient- and family-centered care more quickly.

Elements that contributed to the Consumer Council’s legislative success included:

• Massachusetts’ health reform: Because Massachusetts had already enacted health reform, the state was ready to start working on quality improvement and cost containment.
• HCFA support: Because of its long history in Massachusetts and its respected role as an effective advocate for healthcare consumers, HCFA was able to get the support of many legislators and partner organizations. It also had resources to provide to the Consumer Council.
• Consumer stories: The powerful stories of the members of the Consumer Council captured the attention of legislators, the media, healthcare providers, and the general public.

The rubber meets the road: Implementation

The Massachusetts Department of Public Health (DPH) was charged with developing regulations for implementation of the PFAC provision of the law. HCFA gave input as the regulations were being developed, and Consumer Council members testified at public regulatory hearings in Boston and Springfield. The final version of the regulations had minimal requirements for PFACs, including:

• PFACs must be established by October 2010.
• PFACs must meet at least quarterly.
• At least 50% of PFAC members must be current or former patients and/or family representatives.
• PFAC membership should reflect the community served by the hospital.
• Each hospital must write an annual report on the work of the PFAC. Reports must be completed by October 1 each year and be publicly available.
• It is recommended that each PFAC have a patient or family member as a chair or co-chair.
• Minutes of PFAC meetings, including accomplishments, must be sent to the hospital’s governing body.
• A hospital shall develop and implement written policies and procedures for the PFAC that include, at a minimum, the PFAC’s purposes and goals, membership eligibility, officers, orientation and continuing education, and roles and responsibilities of members.

Although DPH was technically responsible for implementing the PFAC mandate, it was not required to do anything. Understaffed and underfunded, DPH was unlikely to take on this new project. HCFA and the Consumer Council saw an opportunity to ensure the success of the law. Consumer Council volunteers felt strongly that the PFAC law could make a big difference in Massachusetts healthcare, so HCFA stepped into this gap and became a “hub” through which PFACs could communicate and learn from one another.

Since the PFAC mandate took effect, HCFA has developed the following programs to assist hospitals and PFACs in their efforts:

• Organized three annual statewide PFAC conferences (starting in the spring of 2013)
• Collected all hospitals’ PFAC annual reports and wrote summary reports each year giving an overview of promising practices and initiatives (starting in 2012)
• Established a Massachusetts PFAC Advisory Board in 2014 (with more than 20 representatives from PFACs across the state)
• Created and hosted a series of free webinars for Massachusetts PFACs
• Developed a Massachusetts PFAC listserv
• Met with individual PFACs or PFAC members to discuss their work and provide advice and insight

HCFA took the lead, bringing together Massachusetts PFACs and providing them with opportunities to share their challenges and successes.

The most recent HCFA report on PFAC activity across Massachusetts was released in the spring of 2015 and focused on efforts outlined in PFACs’ annual reports from the fall of 2014. This report, as well as previous years’ reports, can be found online (https://www.hcfama.org/patient-and-family-advisory-councils-pfacs). Each hospital’s 2014 report can also be found on the HCFA website (https://www.hcfama.org/2014-hospital-pfac-reports).

The first section of the 2015 HCFA report highlights PFAC efforts that were particularly significant or unique and demonstrated a true partnership between the PFAC and the host institution. Part II of the report gives many examples of practices that other PFACs may want to emulate in the areas of recruitment, orientation, quality improvement initiatives, and more.

PFACs in Massachusetts vary widely in their level of development, involvement in hospital activities, and partnership with the hospital. Some PFACs have been around for many years; others started in 2010 in response to the mandate. Some hospitals, particularly large academic medical centers, have multiple PFACs, while others have one hospitalwide PFAC (or even one PFAC representing two to three hospitals across one system). The next section of this article will focus on two PFACs—one at a large academic medical center and another at a community hospital.

UMass Memorial Medical Center

UMass Memorial is a 779-bed urban teaching hospital in Worcester, Massachusetts, with 132,000 emergency department (ED) visits and over 800,000 ambulatory department visits per year. UMass Memorial has one PFAC that serves the entire medical center plus various “local” PFACs that serve specific populations or service areas. The overarching PFAC has 18 patient/family members and 11 staff members and is part of the patient experience department. In addition to the hospitalwide PFAC, there are separate councils for the Children’s Medical Center, the neonatal ICU, the pediatric ICU, and psychiatry, as well as two affiliated outpatient centers: Barre Community Health Center and Plumley Village Health Services.

Many large hospitals with extensive services decide to develop multiple PFACs in order to best serve the interests and needs of given populations, but they also recognize the value of having an overarching PFAC to work on projects and issues that cut across all areas of the hospital.

UMass has been working to address some challenges it has faced that are common to other PFACs, including recruitment and leadership support. The PFAC partners with community outreach to get new members and to increase the diversity of the council to better reflect the population served by the institution. To develop a closer relationship between the medical center leadership and the PFAC, the medical center president attends meetings on a quarterly basis to give reports and updates and answer questions from PFAC members. In turn, the president has invited the PFAC to send a member to every monthly medical center leadership meeting.

Accomplishments of the UMass hospitalwide PFAC include:

Patient experience rounds: This idea was generated by the PFAC. Members of the PFAC join staff on regular “patient experience rounds” during which they hear directly from inpatients and their families. They bring what they learn from these visits back to a group meeting where they discuss what changes could be implemented to address patient and family concerns.

Dan Wolpert, a founding member of the UMass PFAC, sees patient experience rounds as a great way to get immediate feedback from patients and families. He joined the PFAC because of his own experience with excellent care after he had a heart attack. Wolpert knew that not everyone’s experiences are as positive as his, and he wanted to ensure that there was excellent care provided across the UMass system. Regarding the patient experience rounds, he says:

I am particularly excited about the patient experience rounding program. Hearing directly from inpatients and their families about their experiences and then working in partnership with others to implement changes based on those discussions will lead to improvements in care that will positively impact patients and families for many years to come.

 

Patient-provider communication: Members of the PFAC participate in patient experience scenarios for interns, residents, fellows, and attending physicians and then debrief with them. PFAC members also helped develop live simulated trainings for attending physicians focusing on communication styles and techniques.

Medical school interviews: PFAC members participate in interviews of potential incoming medical school students; in particular, they participate in multiple mini-interviews in which candidates are presented with scenarios and are scored based on how they respond.

Patient education materials: The PFAC helped to design and update the inpatient guide. The council also gives feedback on many patient education materials. This is a common activity for PFACs, but two things set the UMass PFAC’s role apart. One, materials are distributed to council members electronically, allowing for input from those who cannot be at an in-person meeting and also allowing for more time and consideration. Two, every item that the PFAC reviews gets a PFAC stamp of approval, which additionally helps to raise awareness of the PFAC across the hospital.

Whiteboards: This is another common PFAC project. The hospital asked the PFAC for input while redesigning the whiteboards for its inpatient rooms.

Patient portal: As more hospitals implement or revise patient portals, many PFACs are being asked to give input. The UMass PFAC was involved in the creation and implementation of the new patient portal.

Among the challenges of the UMass Memorial PFAC are recruiting (including raising awareness of the council among patients and families and their interest in joining), keeping current members engaged, and placing PFAC members on standing hospital committees.

To learn more about the UMass PFAC’s recent efforts, including more detail about the efforts of the service- or population-specific PFACs at UMass, read its 2014 PFAC report and its 2015 report.

Cooley Dickinson Hospital

Cooley Dickinson Hospital is a 140-bed community hospital that serves small cities, towns, and rural areas in the Pioneer Valley area of western Massachusetts. The hospital is located in Northampton. It has one hospitalwide PFAC with 19 members, including 16 patient/family members and three staff members.

Cooley Dickinson, much like UMass, has partnered with hospital departments that reach into the community to recruit new members and increase diversity. The director of volunteer and guest services worked closely with the PFAC on recruitment efforts. As a result, 11 of the PFAC’s current members joined the council in 2014 or 2015.

The Cooley Dickinson PFAC has a number of subcommittees, some of which work closely with hospital departments or teams. Current or recent PFAC subcommittees are palliative care, ED, membership, ad hoc publicity, and policies and procedures. In addition, members of the PFAC sit on a number of board committees: development and public relations, healthy communities, patient care excellence, and resource. Other hospital teams and committees with PFAC participation now or in recent years include the diversity, equity, and inclusion committee; the rehabilitation services patient experience improvement committee; the cancer center steering committee; behavioral health operations improvement; medication safety; employee engagement; patient satisfaction improvement; and patient flow improvement.

Regarding a PFAC member’s involvement in medication safety efforts, Michael Paquette, RPh, PharmD, BCPS, Cooley Dickinson’s director of pharmacy, says:

Having a PFAC member on the medication safety team has served to be an invaluable resource. He brings with him an inquisitive mind and is never afraid to challenge the team to think differently about the problems at hand. As a consumer of the Cooley Dickinson Health Care services, the PFAC member brings a wealth of real life, patient experience that challenges the team to focus on the patient and not the providers of the care.

The value placed on the PFAC’s input was demonstrated when the hospital was searching for a new president/CEO. The PFAC was involved in the interview process—both early on, when the search firm got the PFAC’s input on qualities they would like to see in the new CEO, and later, when a PFAC member was included in finalist interviews. Further, the chief of staff to the new president/CEO is co-chair of the PFAC, providing a direct connection to the leadership team.

Accomplishments of the Cooley Dickinson PFAC include:

Emergency department: The ED committee included patient and family PFAC members as well as various staff members. The committee was involved in redesigning the ED entrance and waiting room. It created an information sheet titled “What Does Triage Mean to You?” and a brochure to help patients and families know what to expect. The committee also designed and implemented a survey to get feedback from recent ED patients, and helped to update the ED section of the hospital website to provide useful patient information.

Behavioral health: A PFAC member is closely involved in the Anti-Stigma Campaign, and a member has also worked with staff on improving behavioral healthcare in the ED, including building a secure pod for behavioral health patients and ensuring that it meets the needs of patients and families.

Palliative care: The PFAC’s and hospital’s palliative care committees merged about four years ago. With the addition of patient/family voices, the combined committee decided to design and implement community outreach sessions to inform and educate the public about palliative care, hospice care, and MOLST (medical orders for life-sustaining treatment). Over time, they added pieces about shared decision-making and communication tools relating to end-of-life goals. With one to three patient/family volunteers at each outreach session, attendees hear personal stories about end-of-life care experiences with loved ones. Outreach sessions are held at senior centers, service organizations, and places of worship across the Pioneer Valley. In addition to volunteers giving personal perspectives, each session includes presentations by a palliative care physician and a nurse. Over the past four years, the committee has conducted 50 sessions, reaching 1,000 individuals. Cooley Dickinson has seen an increase in the number of individuals using MOLST forms and calls from those who have attended outreach sessions and want to make appointments for themselves or others.

Dr. Jeffrey Zesiger, medical director of palliative care and a leader in this outreach effort, says, “PFAC members are a crucial part of sharing the message of shared decision-making in our communities.” You can see him discussing the MOLST form and decision-making about end-of-life care with two members of the Cooley Dickinson PFAC in this video (http://www.cooley-dickinson.org/main/geriatric-services-resources.aspx).

Don Reutener, a PFAC member who is involved in the palliative care outreach and education effort, states:

In the toolbox of medical practice, the importance of palliative care as a means of reducing distress and enhancing quality of life can not be overestimated. As a community member, I’m proud to be part of the team at Cooley Dickinson that recognizes its physical, emotional, and spiritual benefits to patients and their families. 

 

Looking ahead, the palliative care committee is partnering with libraries across the Pioneer Valley for a community book read of Being Mortal by Dr. Atul Gawande (2014). PFAC members will be involved in leading community discussions about the book.

The Cooley Dickinson PFAC faces challenges that are common to other PFACs. The two biggest challenges, according to PFAC co-chair and chief of staff Eileen Sugrue-McElearney, are integrating PFAC members into outreach and interaction with the community (as has been done with the palliative care committee) and transitioning from long-term tenured PFAC membership to the new committee composition while respecting the legacy of those who are rotating off. This second challenge is one that many PFACs are currently facing, especially newer councils that are dealing with these transitions for the first time.

The Cooley Dickinson PFAC is setting both long- and short-term goals. It created a committee to assess what other PFACs are doing and what activities it could consider for its next five years. The full council will discuss that input and set goals for the years ahead.

Read more about the Cooley Dickinson PFAC’s efforts in its 2014 annual report (https://www.hcfama.org/sites/default/files/cooley_dickinson_2014_pfac_annual_report_final.pdf). If not posted already, the 2015 PFAC will soon be posted online (http://www.cooley-dickinson.org/main/patient-family-advisory-council.aspx).

Conclusion

PFACs across Massachusetts are working hard to improve care by making the patient and family’s voice heard and ensuring that all residents have access to healthcare of high quality. Old or new, all PFACs have challenges to share and accomplishments to celebrate. Common challenges include recruiting (both in general as well as for community representation), member maintenance and engagement, visible and continuous support from hospital leadership, and effective PFAC member placement on hospital committees and teams. Another common challenge is deepening the PFAC’s partnership with the hospital by involving it in activitiess that directly impact care and empowering the PFAC to initiate projects. PFACs in Massachusetts are fortunate to be part of a statewide network that is connected through the Massachusetts PFAC Advisory Board, the annual PFAC conference, and more. Through these connections, they help one another overcome challenges, learn from each other’s experiences, and advance patient- and family-centered care across the Commonwealth.

 

References:

Gawande, A. (2014). Being mortal. New York, NY: Henry Holt.

Health Care For All. (n.d.). Who we are. Retrieved Octboer 26, 2015, from http://hcfama.org/who-we-are.

Patient and family advisory councils (PFACs). (n.d.). Retrieved October 23, 2015, from http://joansfamilybillofrights.com/patient-and-family-advisory-councils-pfacs.