Participant 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.

At Clinical Trials BC, we optimize British Columbians’ involvement in clinical trials by helping to remove barriers and enhance the participant experience. By learning more about the participant perspective, we help BC research sites develop clinical trials that are more accessible, acceptable and beneficial to patients and the public. We’re also collaborating with the BC SUPPORT Unit to support patients as partners within clinical trials and to develop a patient pathway for engagement in clinical trial development and implementation.

Public Opinion Survey

Clinical Trials BC partnered with Clinical Trials Ontario (CTO) to conduct a public opinion survey on Awareness and Perceptions of Canadians on the Benefits and Risks of Clinical Trials (read the news release from 2016). The 2015 survey asked 1,602 Ontario and British Columbia residents about their understanding of, and willingness to participate, in clinical trials.

Read an open-access article about the survey (Sage Journals) 

Canadian Clinical Research Participation Survey

The Canadian Clinical Research Participation Survey is a national initiative by Clinical Trials BC to engage and learn from patients and the public about their clinical trial experience, 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 in 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. Knowledge translation and results dissemination is ongoing provincially and nationally.

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

We welcome requests for collaboration on further workshops or Knowledge Translation activities specific to site needs.

Participant Experience Toolkit

Through its Participant Experience Toolkit, Clinical Trials Ontario (CTO) aims to help its community in their efforts to improve clinical trial participants’ experiences through helping participants feel informed and valued. In working with the clinical trials community, CTO’s toolkit provides guidance, considerations and examples and references to inspire the community around five topic areas (Participant Information and Support, Participant Expense Reimbursement, Participant Experience Surveys, Plain Language Result Summaries, and Thanking Participants).

Access the Toolkit

It Starts with Me

Did you know that healthy people and people with medical conditions can help in the development of new treatments such as medications, surgical procedures and medical devices? By participating in a clinical trial (a type of clinical research) you may be able to help yourself, those you love, and even people you don’t know.

It Starts With Me is a project created in collaboration with Network of Networks (N2) that’s a useful educational resource for potential clinical trial participants. The video above, and the project website, shows the far-reaching benefits of clinical trials when patients and public participate in them.

Researchers: This video and an accompanying toolkit is available to N2 Members, with permission, for participant recruitment. To use this video as part of your recruitment strategy, please contact N2 for more information.