By Fran Yanor, Local Journalism Initiative Reporter

Several rural health groups are calling for the creation of citizen health councils as a way to 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 Centre for Rural Health Research at UBC. “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 survey of rural residents showed 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, which advocates for rural health in BC, 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. “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.”

Genuine citizen-patient engagement is more than a board or council position he says.

“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.”

Unless the imbalance is recognized and corrected, the patient’s voice could get lost in the policy mill.

Accountability is essential, said Kornelsen.

“How well do they work in achieving the citizen patient voice?” Kornelsen asks. “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 group to bring the community perspective to provincial government-level conversations, said Markham. He said the Centre for Rural Health Research is doing the same thing, but also looking at how to change the system.

A survey of 180 rural B.C. communities in 2019 by the Centre for Rural 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 be constructively addressed by meaningful citizen engagement. One 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 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.”

Edward Staples, president of the BC Rural Health Networks, says it’s about honouring the community perspective.

“It’s really a matter of bringing together the health care providers, the elected officials and the end community members to find ways to work together to improve the services in a particular community.”