Patient-Centered Outcomes Research Institute (PCORI). Engagement in Research - Engagement Resources (Foundational Expectations for Partnerships in Research): 6-section website.

• Summary: PCORI* has developed six building blocks for partnerships in health research (1. Diversity & Representation, 2. Early & Ongoing Engagement, 3. Dedicated Funds for Engagement & Partner Compensation, 4. Build Capacity to Work as a Team, 5. Meaningful Inclusion of Partners in Decision Making, 6. Ongoing Review & Assessment of Engagement). While these are expectations for researchers applying to PCORI funding in the United States, they are, more generally, guidance for effective and sustainable engagement with patients, communities, and other partners in pragmatic trials, as well. Each section provides recommendations on the "how" for putting each building block into action: e.g., Under Diversity & Representation, guidance on how to identify diverse perspectives, how to build relationships, how to advance equity in research partnerships, and how to create an inclusive culture is provided. *PCORI is an independent nonprofit organization and the leading funder of patient-centered comparative clinical effectiveness research in the United States.

HRB Trials Methodology Research Network (HRB-TMRN, UCC & TMRP Study Day) - 'Juggle, juggle' - Communicating with multiple stakeholders: a trial management perspective (December 5, 2022): 22-min webinar.

• Summary: Dr. Eleanor Mitchell discusses the importance of communication with partners (referred to as “stakeholders”* in this presentation) in the context of clinical trial management. A list of potential partners (e.g., patients and the public, health professionals, funding bodies, industry, policymakers) and their role throughout the research cycle is outlined (e.g., during the development, conduct, and the analysis and dissemination/implementation stages). Formats of communication are overviewed (i.e., verbal, written, and multimedia) with an emphasis on “knowing your audience” when forging and sustaining partnerships. *Note that the world “stakeholder” is a common term for partners which has negative connotations for certain groups, including Indigenous Peoples.

Macdonald C, et al. A protocol for stakeholder engagement in head and neck cancer pragmatic trials. BMC Cancer. 2024 Sep 5;24(1):1109. (9-page paper)

• Summary: Describes the development of a framework to guide partner engagement in a large pragmatic trial. Highlights core principles of partner engagement including representation of all perspectives, meaningful participation, respectful relationships with partners, and accountability. Overviews how these principles are operationalized to engage relevant partners throughout the course of a pragmatic trial.

Strategy for Patient-Oriented Research (SPOR) SUPPORT Units - Canadian Institutes of Health Research (2024). (1-page website)

• Summary: SPOR SUPPORT (“Support for People and Patient-Oriented Research and Trials”) Units are a collaboration between the federal government and the provinces and territories. SUPPORT Units provide specialized services throughout their regions to researchers, patients, clinicians, and policy makers to conduct patient-oriented research. This page provides hyperlinks to each SUPPORT Unit across Canada and researchers are encouraged to access the available resources and/or to contact their local unit for tailored support.

Vanderhout S, et al. Facilitating and supporting the engagement of patients, families and caregivers in research: the "Ottawa model" for patient engagement in research. Res Involv Engagem. 2022 Jun 7;8(1):25. (12-page paper)

• Summary: Involving patients and families as partners in planning and conducting of research, as well as the dissemination of results, is becoming more common. However, examples of how to do this well are limited. This article describes the development and features of the Ottawa Patient Engagement in Research Model at The Ottawa Hospital and the Ottawa Hospital Research Institute.