Summary: Objective: Patient Family Advisory Councils (PFACs) have been emerging across Ontario to provide a platform for patient engagement in health care. This study aims to highlight lessons learned from the experience with PFACs in three Ontario hospitals.
Methods: Data was gathered from 15 selected participants based on their experience with PFAC and their willingness and ability to discuss their experiences. Surveys were conducted with 12 PFAC members. Interviews were conducted with 3 PFAC domain experts.
Results: Data reveals that while effective PFAC meetings required someone in a leadership role to provide structure, anyone on PFAC could have an immediate and significant impact on the conversation, given there was prior engagement with the group. Clinician integration, education and engagement were necessary elements of a functional PFAC.
Conclusion: Findings reveal that by having PFAC integrated across the hospital and by having patient advisors on clinical quality committees, a discussion emerges which establishes shared learning. This results in the improvement of quality of care for patients as perceived by the patient.
Keywords: Patient Family Advisory Councils, patient engagement, hospitals.
Citation: Tsasis P, Nadesan N, Kuttiyappan K, Lin LD. Lessons learned in implementing Patient Family Advisory Councils in Ontario. J Participat Med. 2017 May 9; 9:e10.
Published: May 9, 2017.
Competing Interests: The authors have declared that no competing interests exist.
The Ontario Ministry of Health and Long-Term Care (MOHLTC) established the Excellent Care for All Act in 2010 and updated it in 2014 in order to help define quality improvement in health care through engagement of patients and their caregivers. As a result, quality of care delivered has taken on a more holistic view, giving emphasis to the organizational contexts and social norms in which the care is enacted. The way in which providers and health service organizations ensure they are delivering patient centered care has become part of the quality improvement initiative, along with how patients perceive and experience their care. With the enactment of the Act, which mandated that hospitals establish a patient relations process to address and improve the patient experience, Patient Family Advisory Councils (PFACs) emerged across the Ontario health care system. The challenge has been one of shared responsibility and collaboration with patients and health care providers to enhance the quality of care and services through a shared decision making process. This study aims to highlight lessons learned from the experience with PFACs in three Ontario hospitals.
Three hospital PFACs were selected for study. One was newly established, one had gone through its development phase, and one had gone through multiple rotation cycles. A multi-method approach was used for data collection, which included naturalistic observation, surveys, interviews, and focus groups. Interviews and focus group discussions were transcribed verbatim, coded and analyzed through content analysis in identifying common themes that emerged from the data. Observations were used to validate the data, along with surveys. Staff advisors and patient advisors from PFACs were purposely selected to participate in the study. They were selected based on their experience with PFAC and their willingness and ability to discuss their experiences. Approximately equal numbers of staff and patient advisors were represented with a total of 15 participants.
All participants had volunteered to participate on PFAC over the last two years. Patient advisors were recruited by the hospitals through a process which involved a formal application and an interview with the Patient Centered Care representative. They were required to have first-hand experience as patients in the hospital or have had a family member in the hospital for which they provided care. There were three additional selection criteria which centered on the patient’s interest, availability, and readiness. With respect to readiness, the patients were interviewed to determine if they had moved beyond any negative experience and were able to apply their personal experience in providing insight for hospital service improvement. Staff advisors were selected on the criteria that they were active on PFAC. They consisted of social workers, nurses, doctors, and management staff. Participation of staff and advisors varied on monthly PFAC meetings, depending on the issue(s) at hand. All staff advisors voluntarily joined the monthly meetings as needed.
Important insights emerged from the data. Observations revealed that while effective PFAC meetings required someone in a leadership role to provide structure, anyone on PFAC could have an immediate and significant impact on the conversation, provided there was some prior engagement with the group. This was a consistent theme in the data, and is explained in the following PFAC stakeholder quote:
“I attended the meeting as director of PFAC in order to assist with patients and family, and to help make sure we have a strategy and we are moving towards a full engagement…instead of just a lecture where we say, we have the knowledge, we will tell you what to do….We don’t want people to come and just to inform patients or just to consult patients — here’s what we are doing; what do you think? We want to learn how to facilitate these conversations, so that there’s this partnership of meaning…we bring expertise, you bring lived experience, so we meet in the middle.”
One approach suggested to keep everyone engaged and up to date on multiple emerging issues was the “Stop Light Approach”. A PFAC participant describes it best as follows:
“With the Stop Light Approach, basically we discussed every issue as if it were on the stop light. If it’s red, it is stalled somewhere, yellow it is awaiting approval; if green, it is being implemented, and so every single meeting, they would follow up with initiatives….So we’re doing
signage and it is here, this is what we’re doing; this is what comes next…so this is what would happen for every single issue. And this is how we would update people in where they are, with all the issues.”
Councils that had department heads and clinical staff engaged with patients had higher success rates as health care providers took on a more realistic perspective of the impact of their care from the conversations. This was described in the following way:
“Our council members are very good at soliciting input from their fellow patients. They are a very close knit group…they got chat groups, so they have various ways of communicating outside of the meetings, so they do pull their friends, and people who experience similar treatments. We had one question we asked…one of the dialysis groups ..they touched base with 40 to 50 people. They were very clear, it isn’t just their voice that they are bringing forward, but the voices of patients as well.”
Integrating clinicians and patients by bringing them together to work in a peer-like manner proved to be important in charting pathways to change, however it has been challenging. This is best captured in the following quote:
“We are all familiar with putting [patient] committees together, that’s not the big issue. The biggest issue is helping people make the shift, so that staff is doing things with patients and is being informed. That may not sound big but it is. That is a tremendous shift for health professionals.
We are used to doing things to people and for people. We are used to providing care. We diagnose and share; we recommend treatment, but to be able to actually engage and say here’s the pros and cons,
and what do you think, and how does that fit in your lifestyle and your goals?… That is a huge shift and to me that is the hardest part, because if you do not engage people…you’re not going to be effective.”
For patient engagement to thrive, hospitals must commit to the idea of collaborating with patients and create the ability to drive action while simultaneously being able to listen and bring patients on board. It all starts with the CEO and senior management. This is best exemplified with the following statement:
“A lot comes from the executives. Our CEO and VP’s really believe it, value it, and promote it [patient engagement] … it needs to start with the CEO and senior management making it a priority…then it will trickle down the organization to heads of other departments. They need to make it an organizational priority … they need to make it a known priority. It can be the head of the department who spreads the word about the value of it or others … you know junior mid-level and
what-not; I think you have to have patient family advisors, management and then you have to have some form of clinical buy-in.”
Education and training play a vital role in widening the circle of involvement and connecting people to each other on a shared vision. This is highlighted in the following quote:
“You gotta have lots of training and opportunities for staff to engage with patients…you can’t just bring people together and hope for the best. We train the physicians and staff before, we
prepare them for the shift. Before we started the dialysis council, we spent a great deal of time meeting as a staff group, trying to understand what the staff will look like and how we will need to
change our ways.”
Councils that had buy-ins early had much better success in being able to tap into self-organizing capabilities in all they did, taking on an ability to create farther buy-ins throughout the institution. This phenomenon is captured in the following quote:
“Every single council that has grown has gone through some sort of trial and error. Those that had success, saw the value in the meetings — they invited people … they had great engagement. The head of the department was very involved. And sometimes I even see, if those clinicians in those clinical leadership roles see that someone in their department is engaged with them; they will want to know more about it; is it good, is it bad, is it this or is it that? You can create [further] buy-in that way.“
Discussion and Conclusion
Findings are consistent with information found in the literature. The literature highlights the importance of senior staff involvement in the advancements of PFAC  which is in accordance with this study’s findings. Two of the three hospitals agreed that their major success in PFAC originates from the support of their senior staff. Hospitals with senior staff support have shown a greater development in establishing effective PFACs.
The literature also suggests the importance of educating staff members, on how to effectively converse with patients and family members. This is consistent with this study’s findings, in which all three hospitals emphasized the importance of providing training and education for staff. The literature indicates that collaboration with physicians is necessary to be able to make various changes that satisfy all hospital stakeholders.. Similarly, all three hospitals in the study indicated the importance of integrating physicians on PFAC to create discussions surrounding challenges faced by the hospitals. Establishing solutions that both physicians and patients agree on ultimately improves patient experience. The literature suggests that patient engagement at multiple levels of the organization has been proven to have greater impact on the hospital. The study findings reveal that integrating PFAC across hospital departments will create more dialogue, consequently creating positive outcomes in quality care improvement initiatives.
PFAC is an initiative of the Excellent Care for All Act in Ontario, with the aim of embedding patients in shared responsibility with health care providers in delivering quality health care services. Findings reveal that by having PFAC integrated across the hospital and by having patient advisors on clinical quality committees, a discussion emerges about many things that historically may not have been shared, making health care providers reflect and, perhaps, subsequently change behavior. Lessons learned herein emphasize the importance of the relationship between clinicians and patients and families in supporting high quality care. The organizational context of professional practice can affect this process, as well as the outcome. Embedding patient engagement in the organization’s mission, vision, and value statement to provide high quality care, attain goals and achieve superior performance legitimizes the process and creates an opportunity to focus on collective learning, resulting in socially constructed knowledge of practice. Implied here is the creation of an environment that benefits from social interaction and provides a safe venue for patients to voice their ideas for health care providers to become more reflective and learn from the diverse experiences and perspectives of their patients. PFAC councils, with patient advisors divided into subgroups across the hospital, tended to do better when they had the assistance of a coordinator to recruit patients on an ongoing basis. Key to this is fostering relationship patterns that provide additional information flow and increase the diversity of understanding, while ensuring that patient and family voices find their way into the strategic plans and processes that govern hospital practice.
Sharing patient experiences with health care professionals can also become a way of validating clinical practices and in developing new care strategies. PFAC can further influence the existing hospital relationship context, allowing for success and failure narratives to emerge as feedback about what works and what does not, along with suggestions and opinions about improvement.
In creating space through PFAC where dialogue can unfold among health care providers and patients as a result of the patient experience, outcomes of intervention can be highlighted which may or may not have been expected. This creates the opportunity for a reflective practice to emerge as a way in which clinicians can improve practice outcomes.
Most approaches in hospitals have been “top down” processes. Reflective adaptive process has not been the norm in hospitals when seeking to identify priority improvement opportunities. This study points to the suggestion that PFAC can create the space in hospitals where some improved change can come about from unexpected conversations that take place around the patient experience and the clinicians’ understanding of that experience.
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Copyright: © 2017 Peter Tsasis, Niwethaa Nadesan, Kritika Kuttiyappan, and Leonardo Lin. Published here under license by The Journal of Participatory Medicine. Copyright for this article is retained by the authors, with first publication rights granted to the Journal of Participatory Medicine. All journal content, except where otherwise noted, is licensed under a Creative Commons Attribution 3.0 License. By virtue of their appearance in this open-access journal, articles are free to use, with proper attribution, in educational and other non-commercial settings.