PHC’s Eating Disorders Program’s Patient and Family Advisory Committee: A journey to real change

Patient centred care is a priority for Providence Health Care, but what does involving patients and families in the planning, delivery and evaluation of programming and care look like in reality? For PHC’s Eating Disorders Program and its Patient and Family Advisory Committee, it’s been about new insights and new inroads into making patients real partners in care, resulting in implementation of positive changes in care.

“We used to have a lot of research in the front hallway for families and patients to read when they first arrived,” says Patty Yoon, operations leader, Eating Disorders Program. “And we thought it was really great information to have readily available. But what we heard from the Patient and Family Advisory Committee was that it was actually doing the opposite — that it was depressing to read that recovery takes three to eight years and that the research could be hard to make sense of, even though the research was very promising. It turned out that our intention to share research and the impact of what was absorbed was quite different.”

Based on the patient and family feedback, the decision was made to move the research from the entry to another area and create a welcome board, where patients and families are involved in planning and content.

It was a simple, but highly meaningful, step. A shift from health care providers thinking they know what’s best for patients, to an awareness of the benefits of patient and family voices collectively broadening everyone’s perspectives.

“Patients and families are already overwhelmed when they get here,” says Patty. “I just would have never thought that something as simple as the hallway was amplifying those feelings.”

Strength in diversity
The Patient and Family Advisory Committee was created in 2013 to work in partnership with PHC’s Eating Disorders Program and ensure that the voices, opinions and needs of the program’s patients and families are included, respected and understood — in the day-to-day of program delivery, as well as in discussions on the development of future projects and care needs.

“When we formed the Advisory Committee, we wanted to ensure it represented a broad range of people and experiences: people who had recovered, those who are still involved in the program, as well as family members,” explains Patty. “And we also wanted to engage people who we knew felt that there could be improvements in our system. Instead of being fearful of their feedback, we rose to the challenge and invited them to the table. It’s allowed for bridges to be built, and the storytelling and the sense-making on both sides to become more clarified.”

Patty relays one such example of a parent who very much believed in advocacy, and had a strong belief in how certification should work: “He shared his views with the committee, and everyone responded with a different perspective. One person said that forced treatment wouldn’t have helped them. Another parent acknowledged that certification can be equally as hard as having a child who has lost control over their eating disorder — everyone sharing their stories changed the conversation from just being an isolated conversation about St. Paul’s not doing involuntary admissions to a larger group discussion about certification, grounded in real-life experience.”

A patient centred approach
“I think what I’ve learned is that in health care we ‘focus’ a lot around patients and families with the best intentions but we don’t often ‘centre’ around them. And it’s a very different thing,” says Patty. “It’s the shift between approaching care thinking ‘I’m going to focus on giving you the best care, based on what I think that is,’ versus coming to the patient asking, ‘what do you think is best for you, and how would you like to see that happen?’ That disconnect is something that the Advisory Committee has really helped to shed a light on for us.”

With a commitment to improving the program for future participants and a desire to contribute to the larger picture of eating disorder treatment in this province, the work of the Advisory Committee is further strengthened by each member’s personal motivations.

“I know how hard it is to recover from an eating disorder, and I know I owe my recovery and my life to the programs that were available to me,” says Marlena Dumas, patient representative and former program participant. “Therefore, I feel that others deserve the help that I received. I want treatment to be the best that it can be, and to serve as many people as possible.”

Part of this work starts with identifying all of the different steps and touch points in St. Paul’s treatment program.

“We did a mapping exercise with the Advisory Committee, which gave us information on what was working and, more importantly, what wasn’t working from the moment of intake all the way through the program experience,” explains Bruce Kung, leader special projects, PHC Mental Health Program. “It provided us with direct feedback on what patients and families were experiencing and helped us realize what we weren’t hearing, and the questions we weren’t asking.”

In addition to these insights forming the foundation for program improvements, experiences like the mapping exercise provide a venue for the Advisory Committee to give honest feedback without fear of punishment or backlash, a previous barrier that prevented patients and families providing feedback, and affirms the value of their voice and perspective.

“Mapping our journey with a skilled quality improvement facilitator has been our most in-depth project as an advisory group to date,” says Deborah Snider, family rep on the Patient and Family Advisory Committee. “Being able to drill down our various concerns and recommendations was a liberating and healing exercise for all of us. We had a colourful visual display of minor issues right down to significant gaps in service, such as lack of transition planning and peer support opportunities.”

Looking ahead
Given this road map, the Eating Disorders Program has already acted on the quick wins that were identified — like the creation of the welcome area or bringing new furniture into a space previously thought of as “cold and sterile” — and has started to organize the larger gaps in programming into future plans and goals.

And while the future is always important to keep in mind, the program and the Advisory Committee are mindful to acknowledge the shifts in the care experience that have already started to take root.

“I must say that Patty Yoon’s ongoing attentiveness with passing on all sorts of information and educational materials and making sure we are included in workshops and conferences has helped me gain a broader perspective, which has been very therapeutic,” says Deborah. “And Bruce’s quality improvement and facilitation skills have helped process our interpersonal issues and build a healing environment in our advisory meetings.”

This groundwork, the wins already achieved, and the dedication on both sides to making something happen sets this partnership up well for driving the large-scale changes that are no doubt on the horizon. But for this moment, perspective is key.

“I think one of the huge outcomes of this committee has just been us learning how to actually show up as partners and behave and work in a new and different way to be able to see something down the road. To me, that’s an outcome. A huge, invaluable win right there,” says Bruce. “If we look back at where the journey of care experience is in development and our organization, it takes a decade for us to see real change, to accomplish those large scale behavioural changes. We’re moving in that direction but it’s still early days.”

Get involved with this year’s Eating Disorders Awareness Week.