Nothing about me without me: Transforming client- and family-focused care, education and research at The Royal

In December 2020, The Royal announced its new organizational strategy: Access, Hope and New Possibilities. President and CEO, Joanne Bezzubetz, referred to it as the beginning of a five-year conversation, one that reinforces collaboration with clients and families and guarantees them a seat at the table.

The process to develop the strategy started with consultations with staff and other providers of care and service, people with lived expertise, researchers, board members, volunteers and donors, and then moved into “strategy hives” for deeper conversations.

Members of both the Client and Family Advisory Council were happy with the approach and are now eager to see what the future holds.

“Those of us who've been involved this past year, we're excited because we feel like possibilities are opening up and clients and families are being listened to. The direction that things are taking are for the benefit of everyone, in care, research, policy making, everything,” says Glenda O’Hara, chair of the Client Advisory Council (CAC).

O’Hara says the process of developing the strategy reflects a significant shift in health care overall, one that has a much deeper respect and appreciation for people who are on the receiving end of that care, and their families.

“We're moving from out of the shadows, to being featured and given the opportunity to lead, to make the case.” - Michèle LangloisMichèle Langlois, chair of the Family Advisory Council (FAC), describes this evolution as a “democratization of care” as opposed to the traditional “top down” approach of the medical profession.

“Now, it's more of a collaboration, an appreciation for the medical (team) to meet clients and families where they are and to really understand all of the components that contribute to wellness,” says Langlois. “We have some work to do, but I think that there's a lot more openness to the idea of holistic care, listening more, seeing families as part of the team, and recognizing that they have needs that might need to be addressed in parallel with the client.”

O’Hara says clients want to be involved and don't want decisions to be made for them. Collaboration and co-design is more than just playing an active role in their own care. It’s about giving clients and families the opportunity to have meaningful input on decisions that affect clients on an organizational level. For example, the CAC represents the client point of view on committees at The Royal and makes recommendations for new policies that affect the organization as a whole.

“The first step was having clients and families at the table. The next step was having us there at the beginning. Then really listening to what we have to offer,” says O’Hara.

“The next step, after the listening, to me, is about leading,” adds Langlois. “We're moving from out of the shadows, to being featured and given the opportunity to lead, to make the case.”

Client involvement doesn’t just apply to care and organizational planning and decision-making, it extends to research as well. Langlois gives the example of Cynthia Clark, a past chair of the FAC. Clark has over 20 years of experience educating, supporting, and advocating on behalf of caregivers of people with mental illness. In March 2020, she was part of a team that received a $100,000 CIHR SPOR Catalyst grant for a research project to examine the needs of caregiver advisors and strengthen client- and family-centered care throughout the mental healthcare system.

O’Hara feels hopeful. She says staff who were hesitant or really didn’t know how to involve clients and families in planning or decision-making in the past are now making sure everyone’s point of view is being heard. Having an organizational strategy that acts as a roadmap to help guide and shape the future of The Royal is the best way to make that happen.

“The culture has shifted at the top, but I'm seeing it shifting elsewhere too, and that's encouraging.”