Trying to 'change the culture of medicine' by letting patients decide what gets researched

A new approach to medical research in Canada lets patients help decide what gets studied, and how.

No longer are scientists toiling away in labs in isolation. Patients and their family members or caregivers are increasingly involved behind the scenes, working alongside researchers, doctors and decision-makers at all stages of the research process.

"Fairness and justice would say these people have got the disease … surely they should have a bit of a say," says Dr. Andreas Laupacis of Toronto's St. Michael's Hospital.

As a health researcher at the Li Ka Shing Knowledge Institute, he's advocated that patients should be more involved in setting research priorities.

Setting 'top 10' research priorities

For him, the light bulb went off during a visit to the James Lind Alliance in the U.K., which works with patients to establish "top 10" research priorities for a variety of medical conditions.

He's now used the same methods with several groups in Canada. The first one involved patients with chronic kidney disease who were receiving, or approaching the need for, dialysis.

Once patients were brought into the process, they identified that itching was a major problem, an issue that had received practically no research attention. In fact, four of the top 10 priorities they came up with were hardly being studied at all.

​Emily Nicholas Angl has spent the past eight years trying to bridge the gap between researchers and patients after her own encounters with the health care system led her to advocate for more patient involvement.

She says working alongside researchers is a new idea for many patients, who are used to participating only as subjects in studies or clinical trials.

"Understanding why it makes a lot of sense [to get involved] isn't always that obvious," she says. "But once they do, everyone feels like this is important and meaningful."

Canadian initiatives

The Canadian government threw its support behind the idea in 2011, when the Canadian Institutes of Health Research launched its Strategy for Patient-Oriented Research, or SPOR. At its heart was a mandate to get patients involved as partners in health research.

SPOR now funds a number of networks that include patients in the research of chronic diseases such as kidney disease, chronic pain and diabetes.

Dr. Adeera Levin is one of the principal investigators at the Can-SOLVE network, which received funding to involve patients and Indigenous people in research on chronic kidney disease. A council of more than 30 patients from across the country helps guide all aspects of the research projects.

"What we're trying to do is change the culture of medicine by putting patients in all our activities," she says.

It's had its challenges. Researchers and patients have had to find a common language free of scientific jargon. Dialysis machines also need to be made accessible at the group's meetings in cities across Canada. But for Levin, involving patients has helped focus the research on what's important.

"Sometimes if you're really trying to change the way you understand a disease or care for a group of patients, having them there is very grounding and makes you much more efficient."

In addition to national networks like Can-SOLVE, every province now has its own organization to foster patient-oriented research.

Virginia Vandall-Walker leads patient engagement for Alberta's SPOR Support Unit, which was first out of the gate in 2013. Her team communicates with researchers who want to get patients involved in their work, and helps them recruit patients, add patient engagement to their grant applications and facilitate sessions with patients.

She notes that some of the researchers who are getting involved are well regarded in their fields, and she hopes they will help engage other researchers from the province.

And she says that because the initiatives are so new, various groups across the country continue to learn from each other and make improvements. "It's like we're in the test tube," she says.

Some concerns

Health researcher Dr. Donald Redelmeier sees a number of upsides to patient engagement in research, but cautions that there are some drawbacks.

He points out that it can be a time-consuming process for researchers who are already facing a tremendous amount of work in launching a new study.

"Maybe it's worth their time, but that's a bit of an open question," he says.

He also points out that the slow, incremental movement of science, and the inevitable failures, can be disheartening for patients who also must invest a lot of time.

For Emily Nicholas Angl, though, the past eight years have taught her that patients are often keen to lend their expertise. 

"I'm always amazed by how much people want to improve things for others," she says. "The altruism is vast in the patient community."