Patient is used as an overarching term that includes individuals who have or have had cancer and informal caregivers, including family and friends, who have cared or are caring for a cancer patient. Patient engagement is defined in the Strategy for Patient-Oriented Research (SPOR) Patient Engagement Framework as meaningful and active collaboration with patients in governance, priority setting, conducting research and knowledge translation. Effective patient engagement occurs throughout the research process and improves the relevance of the research and its translation into policy and practice.
Since 2017, the CCRA has offered the Patient Involvement in Cancer Research Program (PIP) as part of the biennial Canadian Cancer Research Conference (CCRC). PIP provides patient partners with an opportunity to learn about leading-edge science from Canada’s cancer researchers and trainees and to, likewise, offer the scientific community an opportunity to learn from and interact with patient partners keen on building their knowledge of cancer research and demonstrating the value that engaged patients can bring to the cancer research process.
PIP 2023
Our last PIP (2023) was offered in a hybrid format alongside the 2023 CCRC. There were 36 participants: 13 as part of the in-person group and 23 as part of the virtual group. We are grateful to the 2023 Working Committee and our supporters for making the program a reality.
An evaluation of the 2023 program can be found here.
Find out about the in-person program from Melissa Coombs and Dr. Don Desserud:
Find out more about the virtual program from Dr. Rosilene Kraft and Ruth Ackerman:
CCRA Exceptional Leadership in Patient Involvement in Cancer Research
Since 2017, CCRA has, as part of its awards program, recognized individuals who have made exceptional contributions to fostering patient involvement in cancer research in Canada. This individual may be a patient research advocate, a researcher, and/or a care provider or clinician. The awardee for the 2023 CCRA award for Exceptional Leadership in Patient Involvement in Cancer Research was Mr. David McMullen. David was recognized for his leadership and advisory roles in Myeloma Canada and Canadian Myeloma Research Group and as a Canadian Cancer Trials Group Patient Representative. More about David is available here.
2023 PIP Research Grant Competition for Postdoctoral Fellows
As part of its commitment to patient engagement in cancer research, the CCRA released its second funding opportunity as part of PIP earlier this year. This opportunity funds one grant of up to $15,000. This competition was open to postdoctoral-level trainees at Canadian institutions/organizations. Adjudication of the grant is done entirely by the participants of the virtual PIP. [For more information about the adjudication process, see this article about the 2021 PIP Grant here: https://journals.sagepub.com/doi/10.1177/23743735221123424.]
The winner of the 2023 competition is Dr. Nawal Amhis, a medical resident in general surgery who is completing a master’s degree in immunology with Dr. Lee-Hwa Tai at the Université de Sherbrooke, for her project entitled, “Remodeling of the pancreatic tumour microenvironment with oncolytic virotherapy.” For more information, check out this news post and this video.
Resources for Patient Research Advocate
To support patients in their learning journey, CCRA has developed a series of digests on research advocacy as well as different topics within cancer science. A searchable glossary is also available. PIP participants may also elect to be part of an online group within the MS Teams environment, which provides additional opportunities to keep abreast of developments in the field of patient engagement and stay connected with other patient research advocates.
CCRA has also supported PIP participants interested in utilizing the Canadian Cancer Research Survey (CCRS) to explore research investments made in specific cancer research areas. Two of our PIP participants published an article in Archives of Breast Cancer (July 2021) looking at the research investment in metastatic breast cancer research and how it aligned with research priorities generated through a priority setting partnership of patients, caregivers, clinicians, and researchers.