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Member, Clinical Trials BC Working Group

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Open to Provincial Region, Patient partners across the province

Last updated

Lack of communication can be a frustrating problem for research participants. Have you taken part in a clinical trial but were disappointed because you never heard back from the research team about what they found? If so, then join this working group to help researchers improve how they communicate their important findings to participants, patients and the public!

Open to: Patient partners across the province

Lead Organization or Department

Academic Health Sciences Network, Clinical Trials BC

Aim

Clinical trials researchers know that study participants are eager to learn about the results that come out of studies that they take part in, but they haven’t been very good at communication. The aim of this study is to learn more about how to improve communication of study results to participants in British Columbia and ultimately create a more positive culture around clinical trials. Patient partners will join a provincial working group to help brainstorm and develop communication tools as part of a broader strategy to improve recruitment, retention and overall success in clinical trials for BC. The working group will identify simple and effective strategies and recommendations for action that can be shared with the BC Clinical Research community.

Level of Engagement

This opportunity is at the level of collaborate on the spectrum of engagement. The promise to you is that the health care partner will work together with you to formulate solutions and incorporate your advice and recommendations into the decisions to the maximum extent possible.

Eligibility

Anyone who has taken part or has enrolled their child in a clinical trial in BC. (It doesn’t matter if they or their child completed the trial or not.) If you have a strong interest in this work but have not yet completed a PVN orientation and volunteer agreement, are unsure if your experience is a good fit or feel another format of engagement would work better with your availability, please contact the engagement leader directly.

Logistics

  • Vacancies: 2
  • Selected patient partners will be provided with an orientation to the study in advance.
  • Date and time: 4 to 6 meetings each about 1 to 2 hours long will be held from mid-April to July. The number and frequency of meetings will be determined by the working group. Meetings will be scheduled as required during regular business hours based on the availability of team members.
  • Location: all meetings will be held by webinar or telephone conference.
  • Commitment: Approximately 4-10 hours in total meeting time over 4 months. Partners will also be asked to read documents and respond to messages and/or take part in online discussion boards between meetings (estimated time 4-5 hours in total).

Reimbursement

No expenses are anticipated because meetings will be held by phone or webinar, but reimbursement will be available if needed as discussed with patient partners in advance.

Background

Clinical Trials BC recently completed a survey of Canadians to learn more about their experiences participating in clinical trials. We also examined the experiences of those who declined to participate, were not eligible or withdrew early. The goal of this survey was to identify barriers to clinical research participation or areas for improvement around the participation experience. One issue identified by clinical research participants in their responses was that they often did not receive any communications about the results of the study they took part in. Our survey, along with others completed by US researchers, consistently show that most clinical trial participants want to know what the research community learned from their participation, yet most never hear from the sponsor or research site staff at all after a clinical trial has concluded. This study hopes to change that to improve the participation experience in clinical trials and improve clinical research in BC.

Engagement Leader Contact Information

Larry Mróz
Patient Engagement Coordinator, BC SUPPORT Unit | Vancouver Centre
236.521.2065
lmroz@bcsupportunit.ca

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Shannon Griffin

Recently, a PVN Patient Advisor asked healthcare partners, “What are we learning from patients, families, and others thus far during this pandemic?”. This is an excellent question and one to ask ourselves daily.