Issues and trends

Maximizing client involvement in clinical research

By Avril Roberts

Getting people with mental illness to participate in research can be difficult, but the results of a recent German study, published in the International Journal of Psychiatry in Clinical Practice, suggest that does not have to be the case.

Of the 83 people with schizophrenia who responded to a self-report questionnaire, an overwhelming 97 per cent approved at least “a little” of psychiatric research. The top three reasons they selected for participating in research were to help other people, to help the medical profession and to improve their own chances of recovery. The potential for access to better treatment was another reason.

Participants preferred research focusing on psychosocial treatments over research on medication or other biological treatments. They said they would rather do interviews or complete questionnaires than submit to medical procedures such as blood samples, investigational drugs, brain imaging or lumbar puncture. Almost all participants wanted details before participating in a study and wanted to be informed of the results.

Mental health consumer activists in Canada argue that these findings highlight the need for more consumer involvement and empowerment in mental health research. “Consumers are the true experts,” says Dave Gallson, national program director of the National Network for Mental Health in St. Catharines, Ontario. “They know a lot about mental health issues but have historically not been provided with a podium from which they can speak from experience.” Gallson says stigma from the medical community towards people with mental illness and “feelings of mistrust from being treated as a subject, not as an equal” have contributed to consumers’ reluctance to participate in research.

Another reason for this reluctance is the longstanding divide between researchers focused on a medical model of clinical research and consumers who often favour more recovery-based approaches. “It was thought that consumers could not recover from mental illness to regain meaningful lives,” says Chris Summerville, interim chief executive officer of the Schizophrenia Society of Canada in Winnipeg, Manitoba. “We now know that such recovery is possible. Consequently, over the past 20 years, the mantra of the consumer movement in North America has become ‘Nothing about us without us.’”

Recovering consumers argue that researchers should not push forward an agenda when consumers haven’t been consulted about what helps them get better, stay well longer and have less relapse and less hospitalization. Summerville says the only way to get that information is through surveys or forums with consumers in order to help researchers devise more relevant  research questions and by including consumers on research planning committees.

This growing awareness of consumers’ needs and priorities is having an impact on clinical research, says Dr. Gary Remington, director of the Medication Assessment Clinic in the Schizophrenia Program at the Centre for Addiction and Mental Health in Toronto. “In the field of psychopharmacology, for example, we are now looking at outcome measures that don’t just rank whether or not symptoms such as delusions or hallucinations have improved with treatment,” he says. “We’re also interested in whether the medication impairs a person’s functioning and whether it improves other domains, such as quality of life. Ten or 15 years ago, we wouldn’t have asked that.”

Gallson is encouraged by signs of improved co-operation between mental health researchers and consumers and looks forward to greater consumer involvement
in participatory action research, where consumers are not just participants, but are actually involved in defining and carrying out the research. “If we don’t get involved in all aspects of the research process, then we can’t ensure the research will be of value to the consumer community,” says Gallson.