In the last few years there has been a significant focus on documenting permission to be approached for research in hospitals across Canada. The Royal documents this consent during a client’s registration process, which in turn creates a list of individuals who are interested in discussing potential research opportunities.
It doesn’t mean clients have to take part, but it gives them an option to learn more, explains Tammy Beaudoin, clinical research support manager at The Royal.
“It’s a ‘yes, no, or ask me later’ question,” she says. A “yes” keeps clients on the list for ten years; a “no” means they will be asked again a year later. If they choose “ask me later,” the individual will be asked again at their next visit until a concrete yes or no answer is given. (Clinicians may also address the possibility of research involvement later, and document this in a client’s health records.)
According to Ontario’s Personal Health Information Protection Act (PHIPA), researchers are not considered care providers. As such, they are not allowed to approach clients about research opportunities unless they have consent to do so.
For the researcher, the obvious benefit of the registry is the ability to access a larger pool of research participants for a better sample size. Many funding agencies now also require documented client engagement.
Beaudoin estimates there are over 100 active studies at The Royal that are currently recruiting participants. Recruitment can be a struggle, so any tool that makes the process smoother is welcome by everyone. In addition, this initiative opens up research opportunities to clients, family members and community members that they would not be aware of otherwise.
There are many reasons why clients participate in research studies. Some so do because they want to make a difference or give back. Others want to learn more about their illness or explore a topic they are curious about, such as a link between depression and exercise. And there’s no doubt there’s a lot of interesting research happening at The Royal that makes use of exciting new technology, which, for some, is the big draw. (Although it’s worth noting that sometimes engaging with research can be as simple as filling out a questionnaire.)
The PTC registry also allows family members and other individuals to consent to be contacted about research, even if there is no affiliation with The Royal or history of mental illness or substance use. Stringent protocols safeguard privacy.
Beaudoin wants to remind people that all research starts with a question, and that sometimes the best questions are developed by clients and families.
“Sometimes the experts are the people who have a mental illness or live with someone who does, not the actual researchers,” says Beaudoin. “Current practice can’t change without evidence-based research, and research can’t happen without knowledge of current clinical practice successes and challenges.”