Canadian poll shows willingness to participate in clinical trials

June 23, 2016

Results to help better understand public perceptions and identify strategies to attract participation in clinical trials

Carol Mammel was suffering from depression and anxiety when she learned in May 2015 about a clinical trial on depression.

“I had often thought that, if I were eligible for a clinical trial, I would do my best to take part because this is how we find things out,” she explains.

A week later, the 55-year-old had an appointment with a clinical research team at the Mood Disorders Centre in Vancouver, British Columbia. She was accepted into the clinical trial.

For the next four months, Mammel took part in the CAN-BIND study, a cross-Canada clinical trial investigating biomarkers that might help to predict treatment outcomes in people who are depressed and taking anti-depressant medication.

“I hope my participation will lead to discoveries that will help others and give my family clues to a mystery illness that has caused us much anguish.”

She says the medication she received has eased her symptoms, and she benefited from the expertise of the clinical research team. “I am enduringly grateful that I participated in the study.”

According to an Ipsos poll, almost 70% of adults in Ontario and British Columbia would be willing to participate in a clinical trial if given the opportunity. Yet 11% of respondents indicate they have actually been invited to participate in a clinical trial, and only 7% know someone close to them who has been invited to take part.

The online survey was commissioned by Clinical Trials Ontario (CTO) and the British Columbia Clinical Research Infrastructure Network (BCCRIN) to gain insight into public perceptions and knowledge of clinical trials in Canada.

The poll found that 59% of respondents have a somewhat or very positive overall view of clinical trials, while 37% are neither positive nor negative, 3% are somewhat negative, and 1% very negative.

“This the first time we are getting data of this kind in Canada,” says Susan Marlin, President and CEO, Clinical Trials Ontario. “It is important that we understand what the public thinks about clinical trials,” she adds, noting that the discrepancy between the number of people willing to consider participating and who have been invited to join trials is something “that we would like to better understand and to ultimately see a higher invitation rate.”

Of the 1,602 people surveyed, 58% rate their general knowledge of clinical trials as very or somewhat informed. Asked where they would turn for information, if thinking of participating in a clinical trial, 76% would look to their family doctor, or specialist doctor (55%). By comparison, 37% would turn to the Internet.

Heather Harris, Interim Operations Lead, BC SUPPORT Unit, who at the time of the poll was Director, Operations, BCCRIN, says “the findings show a need to provide people with more information about clinical trial participation. The new information will help in designing effective strategies for engaging more people in clinical trials.”

“These findings will be used along with other findings from a currently enrolling survey of Canadians who have been invited to join a clinical trial and either participated or declined, to develop targeted strategies to assist researchers, institutions and health authorities with patient-centered recruitment and retention.”

Many respondents in the Ipsos poll see both societal and personal benefits of clinical trials. A high percentage agree that clinical trials “may help advance science” (78%) and “may help save or improve lives of patients” (78%), followed by “may help improve my disease/condition” (68%).

The poll reported many views when certain statements were put to respondents. Respondents indicate that clinical trial participants: make an important contribution to science (80%); learn more about their health condition (72%); get the best and latest treatments that they would not get if they did not join the clinical trial (58%); receive more time and attention from doctors and their staff (58%); and, have access to the best doctors (47%).

On the other hand, some of those surveyed believe that clinical trial participants: are taking a gamble with their health (38%), and are treated like experimental test subjects, not people (27%). At the same time, almost 90% indicate that they consider clinical trials to be very or somewhat safe.

The main perceived risks are: possibility of side effects (81%); possible risks to my overall health (52%), possibility of receiving a placebo or inactive drug (33%); and possible disclosure of my private medical information (21%).

Asked about important factors in deciding whether to participate in a trial, respondents indicate: if treatment would help (83%); if treatment might cure (79%); if terminal illness (77%); if chronic illness (78%); and, if no other options (78%). Notably, 49% would be somewhat willing to participate and a further 19% would be very willing.

“We will be considering what factors influence whether a person is invited to participate. This is something that we need to learn more about,” says Ms. Marlin. CTO is working to bring more global clinical trials to Ontario, while maintaining the highest ethical standards, and this will increase opportunities to participate.

The poll was conducted online between July 28 and August 12, 2015 with a representative sample of residents. There were 802 interviews in Ontario and 800 in BC. Findings were remarkably consistent in both provinces. The credibility interval for the total sample is plus or minus 2.8 percentage points, 19 times out of 20.