Are patient engagement groups missing minority voices?
Patient engagement is a growing trend in health care, often through patient advisory councils. Ideally, their makeup would match the diversity of the waiting room—and of the population outside of it as well. But that’s often not the case.
“Often the approach taken to public involvement and who is involved will reflect the bias of the funder or the institution or the organization leading it,” says Simon Denegri, the chair of INVOLVE, an advisory group that supports greater public involvement in health care in the U.K. “This will be reflected in the advisory committee, since we tend to invite in those who we are comfortable working with instead of those we need to work with.”
Many organizations, including Health Quality Ontario (HQO), are working towards getting voices from more minority groups and underserved populations on their patient and family advisory councils. “It’s something I think all of us in the system are trying to do better,” says Jennifer Schipper, chief of communications and patient engagement at Health Quality Ontario.
Others are going out into the community to get a better sense of patients’ needs. Camille Orridge, the former CEO of the Toronto Central Local Health Integration Network, saw that first hand when she gathered information about the needs of people in St. James Town, one of the poorest neighbourhoods in Toronto. Her group went out into the community to find people, and paid people who lived in the area to talk to residents and ask them what their health needs were. The report back: their primary concern was getting dental care for their children. “[In] any other [report], that would not have emerged as their number one priority,” she says.
The importance of hearing from diverse groups of people
Part of developing a diverse group is simply having diversity be top of mind. “When I set up the first council, I tried to contact individuals that I knew represented the diversity of the population of Alberta,” says Virginia Vandall-Walker, Patient Engagement Platform lead for Alberta SPOR SUPPORT Unit, which is funded jointly funded by Alberta Innovates and the Canadian Institutes of Health Research. “I just went and I found people, but I pulled on my own professional connections and networks.”
Overcoming practical barriers is also important. “We traditionally engage populations in ways that work for us as the health care planners, so you have to fit into our schedule, come to our location,” says Beth Snow, head of program evaluation at the Centre for Health Evaluation and Outcome Sciences in B.C. “And then even if you get in the door, you’re in a professional environment, you’re supposed to speak our language.”
Snow is part of a group that analyzed the issue of diversity and created an online course and workbook on how to address it. One of their key suggestions is to remove practical barriers. That might include providing childcare, paying for parking, offering food and scheduling meetings outside of work hours. Others have suggested that patients be paid for their time.
Class is an important issue, says Orridge, because “the higher up the class scale you go, the closer people are to each other, and the less diversity you get of experiences.” A white person, Indian person and a black person with masters degrees have more in common than a poor white person out of Toronto’s Regent Park and a new Muslim immigrant, she explains.
Michael Wilson, assistant Director at the McMaster Health Forum, says they use a third-party organization called Asking Canadians to ensure their participants are diverse. “We give them the criteria that we’re interested in, and they help us recruit,” he says. “Our commitment is to try and be as systematic and transparent as possible, and in thinking about how to convene citizen panels, this was really the only way that we were able to figure out how to recruit participants in a systematic way,” he says.
They’ve also addressed practical considerations by paying an honorarium of around $75 a day, and by convening the panels on Saturdays, when fewer people have to work.
Going outside the council
Others suggest that going beyond patient advisory councils is key. “One of the limitations right now is a lot of emphasis on best practices is having a patient and family advisory committee, but that can really limit who can come,” says Maria Judd, senior director of patient engagement and improvement at the Canadian Foundation for Health Care Improvement. In addition to committees, she suggests “going out into the community and meeting with people where they are already gathering and feel safe.”
Denegri agrees. “There is too much emphasis on the ‘advisory group’ and things happening in committee rooms. We need to be engaging with people where they live and work and using the new tools that are available to us such as social media,” he says.
Community-based organizations are also a great way to connect with different groups. They offer a way to learn about the needs of people in that community, as well as insights into how they might be encouraged to participate.
In addition to allowing more people to participate on a practical level, working with community groups can also encourage people who are wary of talking to health care professionals to speak up. That includes those who have had trauma, substance abuse, and mental health issues, who have often had negative experiences with the health-care system and mistrust it.
“We found working with community based agencies was really useful,” says Snow. “They already know the ways that people work well in those groups, and people trust them.” When creating a public health program for young moms, for example, they went to visit teen moms in various locations, including a First Nations reserve and a refugee community centre.
HQO has also reached out to community groups. “We went up to Thunder Bay with our council back in June to meet with francophone, rural remote and indigenous populations, to learn how those communities are engaging on health care quality,” says Schipper. HQO is also trying to recruit more people from underserved populations to its pool of over 150 patients that they draw from for different projects.
It’s best to start with the end in mind and work backwards, says Snow. “The model we have is what’s your program trying to do, who’s your target, how can you recruit that group, where would be an appropriate time and place and format to do that,” she explains.
Surveys and town halls can also be good ways of gathering input from different groups of people. Judd adds that it’s important to think about the ideal level of engagement as well – while advisory councils can be great for allowing patients to have co-ownership over projects and to share their stories deeply, town halls and surveys are great for gathering additional important information, though at a less deep level of engagement.
A multipronged approach like that,alongside attempts to have more inclusive patient advisory councils, is difficult, but worth it, says Snow.
“It’s hard because the people who have the most trouble accessing care are going to be the ones that are the hardest to engage, for the same kind of reasons,” says Snow. “I think it’s worth the extra effort of doing as much as you can to engage more vulnerable people, who traditionally have not been heard, because they have knowledge we don’t have, and lived experiences that we don’t understand.”