The decision-making process in medical research begins with the question: What should be researched? Traditionally, this has been answered either in the researcher’s interest, the interests of the financer, or by the current perceived needs of the world’s population.

A new approach to medical research in Canada allows patients to decide what should be studied, and how the research is carried out. Patients and their family members or caregivers are increasingly being given the opportunity to work 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.

Encouraging patient empowerment and participation

Patients should be more involved in setting research priorities, according to Laupacis who is a health researcher at the Li Ka Shing Knowledge Institute.

Laupacis began his advocacy in patient-determined research following a visit to the James Lind Alliance (JLA) in the UK, a non-profit organisation brings patients, carers and clinicians together to establish “top 10” research priorities for a variety of medical conditions. In Canada, Laupacis has started to use the approach.

One category of patients he worked with suffered from chronic kidney disease and were either 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 previously received almost no research attention.

In fact, four of the top 10 priorities the group came up with were hardly being studied at all.

New treatments can be explored and old ones improved

Government mandates to get patients involved as partners in health research would provide a seal of approval and increase patient participation. State funding of networks that support patients in research would put it on par with other forms of research. For example, the Singapore Patient Engagement Initiative Award recognises outstanding patient engagement projects or initiatives.

According to Dr Adeera Levin, one of the principal investigators at the Can-SOLVE network, a patient-oriented chronic kidney disease research, the participation of patients has helped focus the research on what is 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," says Levin.

Where clinical trials can provide important information about the efficacy and adverse effects of medical interventions in controlled environments, feedback from real-world clinical experience allows comparison and improvement of treatment as well as diagnostics. Clinical trial results are based on the treatment on hundreds to thousands of patients, a small sample size compared to the millions of people given access after approval of the treatment. Therefore, tracking clinical experience is important to identify relatively rare adverse effects and the effectiveness in various populations or under different circumstances.

Most concerns overcome by patient enthusiasm

Despite the upsides to patient engagement in research, health researcher Dr Donald Redelmeier points out some drawbacks, such as the slow and incremental movement of science, and the inevitable failures that can be disheartening for patients who invest a lot of time.

Researchers also have a greater workload, according to Redelmeier, as the process can be time-consuming as they are already swamped with a tremendous amount of work from launching a new study.

On the other hand, Emily Nicholas Angl, Director of Health Engagement and Communication at Reframe Health, an organisation that creates communication resources for patients and health care providers, has learned 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." MIMS

Read more:
Helping patients participate in medical decision-making
Crowd-sourcing medical diagnoses: A possible future of healthcare?
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