Patient Engagement in Cancer Research Community of Practice

A Short History

Judy Needham, a person with lived experience, had the idea to bring people together and in 2022 the Community of Practice was started by 8 people including researchers, people with lived experience and administrators. Community of Practice development included the establishment of Executive Sponsorship and a Secretariat for support provided by CCS, a Steering Committee, the development of a Terms of Reference and a call for membership.

After inviting people from across Canada, the first Community of Practice meeting was held in April 2022.

What is a Community of Practice?

A Community of Practice is a group of people who share a common concern or interest. The group can be informal or formal and can reach across traditional boundaries such as geography or organizations.

Why host a Community of Practice?

A Community of Practice allows a space for sharing, learning, knowledge generation or other collaborative work. It is flexible in design and operation and can adapt and evolve over time. It is an ideal way to share and learn when evidence and practice are progressing rapidly – such as in patient engagement.

What you can expect

As of 2024, there are more than 70 members in the Community of Practice from more than 45 organizations. People have many different backgrounds including lived experience, researchers, clinicians, research funders, trial sponsors, research networks, not for profits, and industry. Seven provinces and more than 20 cities are represented. Growing the diversity of the Community of Practice is one focus of the group.

Four 90-minute virtual meetings (January, March, May, October) per year which include a member-voted topic and keynote speaker, as well as time for community collaboration, sharing and discussion

Smaller subgroups ('work groups') who meet separately and more often than the general meeting schedule to collaborate on a project

A LinkedIn group for networking, communication, resource and event sharing between meetings

If you have an interest in patient engagement in cancer research and are based in Canada, you can join the group below

Join the LinkedIn Group

A Steering Committee who guide the Community of Practice operation.

An annual member survey and polls throughout the year to keep topics and format relevant

Executive Sponsorship by the Canadian Cancer Society, consisting of facilitation, group management, and technology support

Topics Previously Covered	Year
Engaging patients in clinical trials	2022
Online learning modules for patient engagement	2022
Future directions for patient-oriented research	2023
Equity, diversity and inclusion in patient engagement	2023
Patient-centered approach to clinical trials	2023
Patient engagement in cancer clinical trials	2023
Patient engagement in basic science research	2024
Patient research prioritization	2024
Indigenous patient engagement	2024

Step 1

To get involved, fill out a short survey about your experiences and interests.

Step 2

The Community of Practice Secretariat will be in touch with you shortly to share Community of Practice information and meeting details.

Step 3

Take part in the next Community of Practice meeting and participate in activities of interest, such as work groups.

Step 4

Periodically, give feedback to improve the Community of Practice.

Patient Engagement in Cancer Research Community of Practice

Welcome to the Community of Practice

A Short History

What is a Community of Practice?

Why host a Community of Practice?

What you can expect

The Community of Practice currently includes:

How to join

Acknowledgements