Patient Engagement in Cancer Research Community of Practice

Share and learn about patient engagement practices in cancer research.

Welcome to the Community of Practice

Patient engagement is a crucial part of meaningful cancer research but has been siloed across Canada. Recognizing many patient engagement initiatives exist, the Patient Engagement in Cancer Research Community of Practice was developed to bridge these silos by:

  • Building relationships and connections with others involved in patient engagement
  • Developing and harnessing patient engagement resources
  • Facilitating cross-organizational collaborations

The overall mission of the Community of Practice is to embed and optimize patient engagement in cancer research in Canada.

CoP Logo

Image of Judy Needham

A Short History of the Community of Practice

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:

  • Establishment of Executive Sponsorship and a Secretariat for support, currently provided by the Canadian Cancer Society
  • Establishment of a Steering Committee
  • 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.

Image of Judy Needham

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.
Community of Practice members maps

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.

Community of Practice members maps

The Community of Practice currently includes:

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

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


How to join

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.

Acknowledgements

Steering Committee (2024)

  • Jennifer Wilson, CCS
  • Stephanie Michaud, BioCanRx
  • Judy Needham, CCTG
  • Stephen Sundquist, 3CTN
  • Don Wood
  • Meera Rayar, UBC
  • Sevtap Savas, Memorial University
  • Justin Noble, OICR

Secretariat

  • Don Wood
  • Judit Takacs (Maternity Leave)

Founders

  • Judy Needham, CCTG
  • Jennifer Wilson, CCS
  • Stephen Sundquist, 3CTN
  • Kim Badovinac, CCRA
  • Robin Urquhart, Dalhousie University
  • Stephanie Michaud, BioCanRx
  • Antonia Palmer, Kindred Foundation
  • Patrick Sullivan