Clinical Trials BC

Enhancing the clinical research experience

Clinical research provides access for patients to promising new drugs and medical devices. It also enables access to the best available clinical care from health care professionals who are leaders in their fields.

Best practices toolkit: communicating with patients about clinical trials

In 2017, Clinical Trials BC engaged patients and the public through a survey to learn about their clinical trial experiences. Using these findings, a working group of research participants, researchers, ethics administrators and decision makers developed an online toolkit for researchers. This best practices toolkit focuses on communications practices that can improve the experiences of participants taking part in clinical trials.

The toolkit:

Best practices

One-page summary of the best practices online toolkit
Best Practice Recommendations full document (10 pages) – in depth recommendations with background, examples and reference material
YouTube video with URL and ability to embed in your electronic media to assist with awareness and promotion
Two-sided PDF to assist with promotion of the toolkit*

_{*A print version is available upon request}

Introductory webinar

Best-Practice Recommendations for Communicating Results with Clinical Trial Research Participants held on April 22, 2021 featuring Anita David and Marc Saunders.

Templates

A “thank you” template – helpful instructions and suggested wording which is intended to be “plug and play” and easily branded by your organization*
_{*Developed by Clinical Trials Ontario and Clinical Trials BC}
A “Plain-Language Result Summaries” template – helpful instructions and suggested wording, and easily branded by your organization*
_{*Developed by Clinical Trials Ontario and Clinical Trials BC}
Slide deck presentation – can be modified and used for education and awareness with your researchers, patient partners or administration*
_{*Licensed under a Creative Commons Attribution-NonCommercial-ShareAlike 4.0 International License. March 2020.}
Participation Certificate: Coming Soon

About the Canadian Clinical Research Participation Survey

The best practices toolkit was developed following the Canadian Clinical Research Participation Survey. The survey was a national initiative by Clinical Trials BC to engage and learn from patients and the public about their clinical trial experiences, especially people who have declined to participate in a clinical study. Any Canadian who was ever invited to participate or enroll their child in a clinical trial was eligible. National recruitment activities were funded by the Canadian Clinical Trials Coordinating Centre (CCTCC) and conducted in partnership with N2 Canada.

Survey enrollment closed April 30, 2017 with 1,000 responses in both French and English. Data analysis was completed in March 2018.

The survey showed that many clinical trial participants were left with unanswered questions both during and at the end of the research study. As one participant explained: “I would have liked to have the study follow up to me directly about my results and the results of the overall study.” Another stated: “My experience was incredibly disappointing; I never received the study results.”

Such findings are problematic for three main reasons:

Participants felt unsatisfied with their experiences in research, which results in attrition and less willingness to participate in research in the future.
The Canadian Tri-Council Policy Statement clearly states that informing participants of the research results is as important as disseminating results to the research community.
The Canadian Institutes of Health Research acknowledges that the impact of research on the health care system is directly related to effectively communicating research findings back to knowledge users, including members of the public who may be affected by those findings.

View a webinar of the survey results.

Current initiatives

Following the compilation of the Canadian Clinical Research Participation Survey results, a 17-member provincial working group was formed in 2019 to support some of the knowledge-to-action items identified as part of a broader strategy to improve recruitment and retention in clinical trials in BC. The group’s primary objective is to identify methods to increase communication of study results to participants in BC and, ultimately, create a more positive culture around clinical . The group comprises clinical researchers, health system decision makers, patient partners and representatives from health authorities.

Past initiatives

In 2015, Clinical Trials BC partnered with Clinical Trials Ontario to conduct a public opinion survey on the awareness and perceptions of Canadians on the benefits and risks of clinical trials. The survey asked 1,602 Ontario and British Columbia residents about their understanding of, and willingness to participate in, clinical trials.

Partner resources

The Clinical Trials Ontario Participant Experience Toolkit aims to help the clinical trials community improve clinical trial participants’ experiences by helping participants to feel informed and valued. The toolkit provides guidance, considerations, examples and references around five topic areas:

Participant information and support
Participant expense reimbursement
Participant experience surveys
Plain language result summaries
Thanking participants

Access the Clinical Trials Ontario Participant Experience Toolkit.