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Abstract Background Evaluation of patient engagement practices are frequently researcher-driven, researcher-funded, and asymmetric in power dynamics. Little to no literature on patient experiences in patient engagement exist that is are not framed by institutionally-driven research inquiries (i.e., from the lens of a research team lead, or healthcare administrative setting). Understanding these perspectives can help us understand: (i)what matters to patients when they are engaged in research; (ii)why it matters to them, and(iii) how to improve patient engagement practices, so that the needs and priorities of patients are consistently met. Methods This is a patient partner-initiated study. Study authors (including patient partners) conducted a conventional and summative content analysis of textual data retrieved from a highly engaged conversation on Twitter regarding the hashtags #HowNotToDoPatientEngagement and #HowToDoPatientEngagement posted between February 2018 to June 2021. Twitter is a microblogging platform that allows for free-flowing discussions between users not pre-bound by specific community groupings (like within that of Facebook). Results A total of 276 tweets were retrieved from 178 separate contributors across seven geographical locations. Four stakeholder groups were identified. We generated 24 codes, nine subthemes and five overarching themes: respect, support, collaboration, inclusivity and impact. Four of these themes are closely aligned with the Strategy for Patient Oriented (SPOR) Patient Engagement framework. We identify impact as a separate and new theme. Interpretation Based on our findings we offer the Engaging with Purpose Patient Engagement Framework that defines and describes respect, support, collaboration, inclusivity and impact as five key pillars of meaningful patient engagement.

Abstract Introduction Recent shifts in the patient, family and caregiver engagement field have focused greater attention on measurement and evaluation, including the impacts of engagement efforts. Current evaluation tools offer limited support to organizations seeking to reorient their efforts in this way. We addressed this gap through the development of an impact measurement framework and accompanying evaluation toolkit—the Engage with Impact Toolkit. Methods The measurement framework and toolkit were co‐designed with the Evaluating Patient Engagement Working Group, a multidisciplinary group of patient, family and caregiver partners, engagement specialists, researchers and government personnel. Project activities occurred over four phases: (1) project scoping and literature review; (2) modified concept mapping; (3) working group deliberations and (4) toolkit web design. Results The project scope was to develop a measurement framework and an evaluation toolkit for patient engagement in health systems that were practical, accessible, menu‐driven and aligned with current system priorities. Concept mapping yielded 237 impact statements that were sorted, discussed and combined into 81 unique items. A shorter list of 50 items (rated 8.0 or higher out of 10) was further consolidated to generate a final list of 35 items mapped across 8 conceptual domains of impact: (1) knowledge and skills; (2) confidence and trust; (3) equity and inclusivity; (4) priorities and decisions; (5) effectiveness and efficiency; (6) patient‐centredness; (7) culture change and (8) patient outcomes and experience. Working Group members rated the final list for importance (1–5) and identified a core set of 33 items (one for each of the 8 domains and 25 supplementary items). Two domains (priorities and decisions; and culture change) yielded the highest overall importance ratings (4.8). A web‐based toolkit (www.evaluateengagement.ca) hosts the measurement framework and related evaluation supports. Conclusion The Engage with Impact Toolkit builds on existing engagement evaluation tools but brings a more explicit focus to supporting organizations to assess the impacts of their engagement work. Patient Contribution Patient, family and caregiver partners led the early conceptualization of this work and were involved at all stages and in all aspects of the work. As end‐users of the toolkit, their perspectives, knowledge and opinions were critical.

Plain English summary We interviewed 10 individuals associated with studies that were funded through the Ontario Strategy for Patient Oriented Research (SPOR) Unit. We asked them about how they had engaged patients, families or caregivers in their study, how this engagement had influenced their study, the challenges they faced, and advice for other researchers considering engaging with patients, families and caregivers. We found that patients had been engaged in a variety of ways and at different times. The changes brought about by the patient engagement varied between studies but tended to reflect an improvement in how relevant the study was to patients. Researchers also shared how engagement with patients, families, and caregivers had changed their approaches to future research. Key challenges facing researchers included finding partners that were appropriate for the study, as well making sure that the approach to engagement overcame issues such as financial or logistical barriers that could prevent patients, families or caregivers from partnering with the study.

BackgroundThe COVID-19 pandemic caused disruptions across healthcare systems globally exposing the precarious state of patient engagement across all levels of healthcare. While evidence is emerging to describe how engagement was affected across various settings, insights about how some organizations at the policy and practice level of healthcare were able to sustain or adapt patient engagement activities is lacking.ObjectiveThis paper addresses the following research question: "How were healthcare, government, and patient partner organizations able to sustain or adapt patient engagement activities during the COVID-19 pandemic?"MethodsA qualitative descriptive study was conducted to understand how patient engagement activities were maintained or adapted in a variety of healthcare, government, and patient partner organizations in Canada throughout the pandemic. This analysis was part of a larger qualitative, multiple case study where one-to-one interviews were conducted with organizational leaders, managers and patient partners.ResultsThe following themes were identified as key aspects of maintaining or adapting patient engagement activities: 1) having an embedded organizational culture of patient engagement; 2) adapting patient engagement activities to focus on COVID-19 response efforts; 3) having patient partners who exercised leadership and advocacy to support patient care and experiences during the pandemic; and 4) leveraging virtual technology as a communication tool to engage patient partners.ConclusionThis paper highlights important insights that may be useful to other health care organizations on how to sustain or adapt patient engagement activities during a healthcare crisis. Having patient engagement embedded within an organization's culture supported by, but not limited to, infrastructure, resources, investments in dedicated staff and patient partner leadership, and communication strategies and tools enabled continued patient engagement activities during the pandemic.