Integrating Patient-Centred Research in the Canadian Cancer Trials Group

Abstract

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 “Inform” to “Involve” to “Collaborate” 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.

Recruitment of patients, carers and members of the public to advisory boards, groups and panels in public and patient involved health research: a scoping review

“…The literature was predominantly based in the UK (35%, n=18),24–41 USA (24%, n=12)16 42–52 and Canada (20%, n=10) 53–62. The remaining studies (22%, n=11) were based in multiple countries (8%, n=4),63–66 Australia (4%, n=2),67 68 Denmark (4%, n=2), Ireland (2%, n=1),69 Japan (2%, n=1)70 and Norway (2%, n=1) 71.…”

“…Of the extracted literature, 69% (n=35) were empirical, and the remaining 31% (n=16) were non-empirical. Of the empirical studies, the majority were qualitative in nature (54%, n=19),28 30 34 35 37 38 44 47 49 56 59 60 64 67–69 71–73 followed by mixed methods (29%, n=10),26 31 32 40 51 52 54 58 62 66 and then quantitative (17%, n=6)42 46 53 55 65 70 study designs. We will now explore findings based on the specific research objectives of this review.…”

Clinical trial reform in the post-COVID era

“…With this focus on patient and public involvement, the CCTG has improved their trial enrollment and activity, noting the highest accrual and activity data in years. 26 This highlights the importance of patient involvement and autonomy in their care, regardless of the platform. It is suggested that DCTs incorporate these patient-centered principles to facilitate inclusion.…”

Patient‐centricity: Research's new shibboleth?

“…27 Hence PCR is a collective good justified by COMMENTARY | 735 the rhetoric of public accountability, 28 and likewise justifying its public funding and merit by assessment using approved metrics of 'person-centredness' and by submission to social control and governance by 'Royal Science'. 29…”

“…Research elites comprising ‘Royal Science’ attain power over the research by providing an alternative solution and rationality to ‘legitimate the concrete use of power’ 27 . Hence PCR is a collective good justified by the rhetoric of public accountability, 28 and likewise justifying its public funding and merit by assessment using approved metrics of ‘person‐centredness’ and by submission to social control and governance by ‘Royal Science’ 29 …”