You ‘should be paid’ to advise on SCI research

11 September, 2019

People with lived experience should resist token enlistment in research projects and insist on full participation, Canadian advocate John Chernesky argues.

People with lived experience should be paid to advise on all research into spinal cord injury, an international advocate told AQA guests late last month.

Payment should match sums paid to other expert advisers with a similar depth of experience, John Chernesky told health professionals, researchers, research funders, Spire peer support volunteers, and other attendees at the AQA office in Fairfield.

John is Consumer Engagement Lead with the Rick Hansen Institute, a global spinal cord injury (SCI) network based in Vancouver, Canada. 

The institute, an initiative of wheelchair marathon legend Rick Hansen, aims to accelerate work towards a cure for SCI-related paralysis. 

In his address, John summarised progress internationally in drawing the consumers of SCI research into the research process – not just as subjects to be poked and prodded, but as influential members of research teams.

He explained that by consumers, he meant people whom the research aimed to help – people who had been injured, but also family, friends, carers, members of community organisations, even surgeons, depending on the aim of a particular study.

It had been shown that consumer participation in research could make the work more effective, John said.

He said that increasingly, funders of research were demanding that grant applicants show how their projects would draw on consumer experience.

But he said the risk remained that consumers would be included only in a token manner – perhaps enlisted to lend their authority to a research proposal, and then ignored until they were invited to endorse the completed project as helpful.

John said one aim of his work was to influence researchers so that they could see the benefits of partnering fully with consumers in the creation of knowledge.

A full partner would help design and direct the research, and would be credited on published papers.

A second aim was to encourage people with lived experience to make the most of their participation – by developing a good understanding of the research process, the problems faced by researchers, and the benefits that could flow to researchers from consumer involvement.

John was in Melbourne to present at the 2019 Annual Scientific Meeting of ANZSCoS, the Australian and New Zealand Spinal Cord Society. He reprised his talk at the AQA office, and responded to questions.

In answering a question from the floor, John cited a 2012 documentary, available on YouTube, titled How to Survive a Plague, which showed how at-risk people at the height of the AIDS epidemic had engaged with research organisations to accelerate progress on effective treatments.

“People don’t die from AIDS any more,” John said. “And the reason people don’t die from AIDS is that people who were dying from AIDS got involved in the research.”

Author Ian Baker is a content writer with AQA/Spire.

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