Planning the Evaluation of Patient Engagement in the PriCare Research Program

Abstract

The involvement of patients, their families, or their representatives is becomingincreasingly common in health-care research. However, theoretical justif cationof patient engagement (PE) and consistent guidance on how to include patients askey stakeholders on research teams are still lacking. Tis paper describes how the Pri-Care group integrates PE into its program’s governance structure and uses a programlogic perspective to engage patients in the planning phases of a research study basedon resources, processes, and relationships, guided by the SPOR-CIHR’s PE framework.Te PriCare approach facilitates the evaluation and continuous improvement of PE.

Patient engagement in health implementation research: A logic model

“…Danish et al's 29 study on the description of the PriCARE ‘program logic perspective’ identified resources, processes and relationships (rather than context, resources, activities and outcomes). Their study supported the importance of a governance structure that integrates patient partnerships early in the programme to facilitate the evaluation and continuous improvement of PE.…”

“…Their study supported the importance of a governance structure that integrates patient partnerships early in the programme to facilitate the evaluation and continuous improvement of PE. The authors argue that providing a framework for documenting, categorizing, monitoring and improving PE activities throughout the various phases of a research project strengthens PE evaluation capacity 29 . Boivin et al 8 ,p.2 concur in an editorial on the importance of rigorous evaluation of the patient and public involvement in research, stating that there is a need to ensure that PE ‘becomes an integral, robustly conducted, and well‐resourced component of research, not a last minute add on’.…”

“…The Logic Model identifies expertise as a necessary human resource for significant PE. According to Danish et al, 29 investigators have a major leadership role in supporting the integration of PE activities by modelling positive attitudes and behaviours towards PE, ensuring the availability and the expertise of dedicated personnel to facilitate the management of PE resources, processes and relationships, and ensuring a timely response to challenges. On their side, Beland et al 31 identified that patient partners may also play an important leadership role by providing skills to facilitate meetings amongst patient partners.…”

“…I would say there's been a very highly participative group, as you know, functioning independently as well as together with the rest of us as well to really offer advice and support. And even independently, you 29 Boivin et al 8,p.2 concur in an editorial on the importance of rigorous evaluation of the patient and public involvement in research, stating that there is a need to ensure that PE 'becomes an integral, robustly conducted, and well-resourced component of research, not a last minute add on'.…”

“…Furthermore, the team members are also involved in many other projects involving PE and bring external perspectives as well. Lastly, the Logic Model does not include challenges in the PriCARE programme regarding PE, but they have been documented elsewhere by Danish et al29 and Beland et al31 The Patient Engagement in Health Implementation Research Logic Model will help academic researchers, healthcare providers, decision makers and patient partners involved or interested in PE in implementation research to plan and operationalize the resources and activities to achieve desired outcomes.AUTHOR CONTRIBUTIONS Catherine Hudon, Maud-Christine Chouinard, Kris Aubrey-Bassler, Shelley Doucet and Vivian R. Ramsden contributed to the PriCARE research programme conception and design. Mathieu Bisson and Catherine Hudon led the different steps of the study.…”