Several rural health groups are calling for the creation of citizen health councils as a way to correct decision-making imbalances and genuinely involve rural patients in healthcare policy-making.
“Citizen patients want a voice in their healthcare system,” said Dr. Jude Kornelsen, co-director of the B.C. Centre for Rural Research. “We don't have a codified or systematic way of providing a mechanism for real citizen patient voices in healthcare planning.”
A recent review by Kornelsen’s group laid out the rationale and benefits of citizen health council models around the world and a second survey of rural residents garnered enthusiasm for rural health councils. According to the review, citizen health councils are formed “to improve decision-making and population health outcomes, to ensure public trust and accountability, and to promote inclusivity, community ownership and community empowerment.”
Dr. Ray Markham, executive director of the B.C. Rural Coordination Centre, a multi-pronged entity that funds research, educates practitioners, and facilitates rural healthcare stakeholder collaboration, likens the intention behind citizen health councils to the First Nations approach of ‘Nothing about us, without us.’
“Whenever you get into equity in conversations, often people will want to speak for somebody,” said Markham, who also practices family medicine in Valemount, BC. “But fundamentally, we really need to explore how the people who are affected, or where the inequity sits, have a meaningful voice in shaping what happens.”
Citizen patient health councils can help correct power imbalances, enabling those who are 'excluded from political and economic processes... to be included moving forward,' according to the review.
“You can have 10 people sitting around a table and one or two patients bringing a patient perspective,” Markham said. “But some of these groups will have a very strong infrastructure sitting behind them.”
Accountability is essential. Genuine citizen patient engagement goes beyond a board or council position, said Kornelsen.
“How well do they work in achieving the citizen patient voice? She asked. “There's some things that we have to be thinking mindfully about, like ensuring that it's not just a tick box exercise, that it is authentic voice, and that it represents all spectrums.”
The BC Rural Coordination Centre funds groups to pull together that collective perspective and has convened a citizen community group to bring the community perspective into provincial government-level conversations, said Markham.
“Jude's work is really helping looking at a citizen or community voice to help shape research and evidence development,” said Markham. “And we're doing the same thing, but looking at how (to make) system change.”
It's important to honor the community perception, said Edward Staples, president of the BC Rural Health Networks, a collective of small communities working to improve health service delivery. “Their perceptions and understandings can be used to help develop informed policy, strategies for improvement, and ways to make sure that the needs of the community are being served properly.”
A survey of 180 rural B.C. communities in 2019 by the B.C. Centre for Health Research revealed significant interest in citizen health councils.
“They know what's happening on the ground,” said Kornelsen. “And from the most important perspective, which is those receiving health care.”
More than 1,900 rural residents identified concerns which might all be constructively addressed by meaningful citizen engagement in policy-making and service delivery decision-making.
A pressing concern identified by some was the need for greater or more consistent access to primary and specialist health care.
People understand a community under 10,000 won’t have specialist and sub-specialist care, said Kornelsen. “They get that, but why is the first recourse leaving the community to access care?”
Some participants suggested specialists could operate rotating clinics with reduced hours in different communities. Others wondered if some specialist consultations could be done in the community from the family physician’s office, linked with the specialist via telephone or video chat.
Other top issues were cost and transportation. For instance, a surgical patient may have to travel to a regional centre or even Vancouver for a pre-operative consultation, return again for the actual operation, then go back a third time for a post-operative follow-up.
“People spend more than $2,000 per person, on average to leave their community,” said Kornelsen. “It might be okay for people who can afford it, but there's a lot of people who can't.”
Citizen health councils might not be the magic bullet, but that voice needs to be heard alongside other stakeholders.
“It’s really a matter of bringing together the health care providers, the elected officials and the end community members,” Staples said. “To find ways to work together to improve the services in a particular community.”
“You can’t do everything,” he said. “But that community patient perspective, as well as, the operational health authority perspective, are really important to actually get to that sweet spot where things are going to shift.”