{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,9]],"date-time":"2026-09-09T04:25:59Z","timestamp":1788927959084,"version":"build-2803163510"},"reference-count":22,"publisher":"MDPI AG","issue":"1","license":[{"start":{"date-parts":[[2021,1,21]],"date-time":"2021-01-21T00:00:00Z","timestamp":1611187200000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Current Oncology"],"abstract":"<jats:p>The inclusion of patients as partners in research is a key link in the delivery of patient-centred care in healthcare systems. Despite genuine intentions to engage patients in authentic partnerships, efforts can result in tokenism and benefits of engagement are missed. Understanding how patient engagement provides value along the research to patient-care continuum and how to best engage patients as partners are key. This document describes the method taken by the Canadian Cancer Trials Group (CCTG) to implement meaningful patient centricity and engagement and the benefits realized. Originally, Patient Representatives were recruited and assigned to CCTG Committees. Lacking guidance, the role was one of a passive meeting attendee. A gap analysis identified a need for clarity in expectations, understanding of the linkage to CCTG strategic objectives, and supporting tools and training. A plan was developed and successfully implemented in three phases, each phase building on the previous, the level of patient engagement simultaneously changing from \u201cInform\u201d to \u201cInvolve\u201d to \u201cCollaborate\u201d on the International Association for Public Participation (IAP2) scale. Results include significant contributions to increased patient accrual in CCTG trials, to increased CCTG grant funding, as well as recognition and adoption of these practices within Canada and internationally.<\/jats:p>","DOI":"10.3390\/curroncol28010062","type":"journal-article","created":{"date-parts":[[2021,1,21]],"date-time":"2021-01-21T09:49:21Z","timestamp":1611222561000},"page":"630-639","update-policy":"https:\/\/doi.org\/10.3390\/mdpi_crossmark_policy","source":"Crossref","is-referenced-by-count":16,"title":["Integrating Patient-Centred Research in the Canadian Cancer Trials Group"],"prefix":"10.3390","volume":"28","author":[{"given":"J.","family":"Needham","sequence":"first","affiliation":[{"name":"Canadian Cancer Trials Group, Queen\u2019s University, Kingston, ON K7L 3N6, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-8826-4494","authenticated-orcid":false,"given":"J.","family":"Taylor","sequence":"additional","affiliation":[{"name":"Canadian Cancer Trials Group, Queen\u2019s University, Kingston, ON K7L 3N6, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"D.","family":"Nomikos","sequence":"additional","affiliation":[{"name":"Canadian Cancer Trials Group, Queen\u2019s University, Kingston, ON K7L 3N6, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"1968","published-online":{"date-parts":[[2021,1,21]]},"reference":[{"key":"ref_1","doi-asserted-by":"crossref","first-page":"745","DOI":"10.1007\/s40271-020-00460-5","article-title":"Patient Engagement Partnerships in Clinical Trials: Development of Patient Partner and Investigator Decision Aids","volume":"13","author":"Parry","year":"2020","journal-title":"Patient"},{"key":"ref_2","doi-asserted-by":"crossref","unstructured":"Heckert, A., Forsythe, L., Carman, K., Frank, L., Hemphill, R., Elstad, E., Esmail, L., and Lesch, J.K. (2020). Researchers, patients, and other stakeholders\u2032 perspectives on challenges to and strategies for engagement. Res. Involv. Engagem., 6.","DOI":"10.1186\/s40900-020-00227-0"},{"key":"ref_3","doi-asserted-by":"crossref","unstructured":"Skovlund, P., Nielsen, B., Thaysen, H., Schmidt, H., Finset, A., Hansen, K., and Lomborg, K. (2020). The impact of patient involvement in research: A case study of the planning, conduct and dissemination of a clinical, controlled trial. Res. Involv. Engagem., 6.","DOI":"10.1186\/s40900-020-00214-5"},{"key":"ref_4","unstructured":"(2020, September 19). nihr.ac.uk. I Want to Help with Research. Available online: https:\/\/www.nihr.ac.uk\/patients-carers-and-the-public\/i-want-to-help-with-research\/."},{"key":"ref_5","doi-asserted-by":"crossref","unstructured":"Deverka, P.A., Bangs, R., Kreizenbeck, K., Delaney, D.M., Hershman, D.L., Blanke, C.D., and Ramsey, S.D. (2018). A New Framework for Patient Engagement in Cancer Clinical Trials Cooperative Group Studies. JNCI J. Natl. Cancer Inst., 553\u2013559.","DOI":"10.1093\/jnci\/djy064"},{"key":"ref_6","doi-asserted-by":"crossref","first-page":"17","DOI":"10.1007\/s11136-017-1581-x","article-title":"Methods and impact of engagement in research, from theory to practice and back again: Early findings from the Patient-Centered Outcomes Research Institute","volume":"27","author":"Forsythe","year":"2018","journal-title":"Qual. Life Res."},{"key":"ref_7","doi-asserted-by":"crossref","first-page":"1033","DOI":"10.1007\/s11136-014-0893-3","article-title":"Conceptual and practical foundations of patient engagement in research at the patient-centered outcomes research institute","volume":"24","author":"Frank","year":"2015","journal-title":"Qual. Life Res."},{"key":"ref_8","unstructured":"Clinical Trials Transformation Initiative (2020, September 19). CTTI Recommendations: Patient Groups and Clinical Trials. Available online: https:\/\/www.ctti-clinicaltrials.org\/sites\/www.ctti-clinicaltrials.org\/files\/7-revised_pgct-recommendations-2019_final.pdf."},{"key":"ref_9","doi-asserted-by":"crossref","first-page":"19","DOI":"10.1177\/1740774518755055","article-title":"Patient engagement in clinical trials: The Clinical Trials Transformation Initiative\u2019s leadership from theory to practical implementation","volume":"15","year":"2018","journal-title":"Clin. Trials."},{"key":"ref_10","unstructured":"Needham, J. Advancing the Role of the Lay Representative in NCIC CTG. Personal Communication, (Canadian Cancer Trials Group, Kingston, ON, Canada)."},{"key":"ref_11","unstructured":"(2020, December 12). Iap2 International Association for Public Participation. Available online: https:\/\/cdn.ymaws.com\/www.iap2.org\/resource\/resmgr\/pillars\/Spectrum_8.5x11_Print.pdf."},{"key":"ref_12","unstructured":"(2020, December 12). 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