BackgroundPatient engagement in research (PEIR) is promoted to improve the relevance and quality of health research, but has little conceptualization derived from empirical data.ObjectiveTo address this issue, we sought to develop an empirically based conceptual framework for meaningful PEIR founded on a patient perspective.MethodsWe conducted a qualitative secondary analysis of in‐depth interviews with 18 patient research partners from a research centre‐affiliated patient advisory board. Data analysis involved three phases: identifying the themes, developing a framework and confirming the framework. We coded and organized the data, and abstracted, illustrated, described and explored the emergent themes using thematic analysis. Directed content analysis was conducted to derive concepts from 18 publications related to PEIR to supplement, confirm or refute, and extend the emergent conceptual framework. The framework was reviewed by four patient research partners on our research team.ResultsParticipants’ experiences of working with researchers were generally positive. Eight themes emerged: procedural requirements, convenience, contributions, support, team interaction, research environment, feel valued and benefits. These themes were interconnected and formed a conceptual framework to explain the phenomenon of meaningful PEIR from a patient perspective. This framework, the PEIR Framework, was endorsed by the patient research partners on our team.ConclusionsThe PEIR Framework provides guidance on aspects of PEIR to address for meaningful PEIR. It could be particularly useful when patient‐researcher partnerships are led by researchers with little experience of engaging patients in research.

ObjectivesTo develop and examine the content and face validity of the Patient Engagement In Research Scale (PEIRS) for assessing the quality of patient engagement in research projects from a patient partner perspective.MethodsOur team of researchers and patient partners conducted a mixed qualitative and quantitative study in three phases. Participants were English-speaking adult patients (including informal caregivers, family members, and friends) with varying experiences as partners in research projects in Canada. 1) Questionnaire items were generated following thematic analysis of in-depth interviews and published literature. 2) A three-round e-Delphi survey process via email correspondence was undertaken to refine and select the items for a provisional PEIRS. 3) Two rounds of cognitive interviewing elicited participants’ understanding and opinions of each item and the structure of the PEIRS.ResultsOne hundred and twenty items were generated from 18 interviews and organized across eight themes of meaningful engagement of patients in health research to form an initial questionnaire. The e-Delphi survey and cognitive interviewing each included 12 participants with a range of self-reported diseases, health-related conditions, and use of healthcare services. The e-Delphi survey yielded a 43-item provisional PEIRS. The PEIRS was then reduced to 37 items organized across seven themes after 1) refinement of problems in its instructions and items, and 2) the combining of two themes into one.ConclusionsWe developed a 37-item self-reported questionnaire that has demonstrated preliminary content and face validity for assessing the quality of patient engagement in research.

Objective To shorten the Patient Engagement In Research Scale (PEIRS) to its most essential items and evaluate its measurement properties for assessing the degree of patients’ and family caregivers’ meaningful engagement as partners in research projects. Methods A prospective cross‐sectional web‐based survey in Canada and the USA, and also paper‐based in Canada. Participants were patients or family caregivers who had engaged in research projects within the last 3 years, were ≥17 years old, and communicated in English. Extensive psychometric analyses were conducted. Results 119 participants: 99 from Canada, 74 female, 51 aged 17‐35 years and 50 aged 36‐65 years, 60 had post‐secondary education, and 74 were Caucasian/white. The original 37‐item PEIRS was shortened to 22 items (PEIRS‐22), mainly because of low inter‐item correlations. PEIRS‐22 had a single dominant construct that accounted for 55% of explained variance. Analysis of PEIRS‐22 scores revealed the following: (1) acceptable floor and ceiling effects (<15%), (2) internal consistency (ordinal alpha = 0.96), (3) structural validity by fit to a Rasch measurement model, (4) construct validity by moderate correlations with the Public and Patient Engagement Evaluation Tool, (5) good test‐retest reliability (ICC2,1 = 0.86) and (6) interpretability demonstrated by significant differences among PEIRS‐22 scores across three levels of global meaningful engagement in research. Conclusions The shortened PEIRS is valid and reliable for assessing the degree of meaningful patient and family caregiver engagement in research. It enables standardized assessment of engagement in research across various contexts. Patient or public contribution A researcher‐initiated collaboration, patient partners contributed from study conception to manuscript write‐up.

BackgroundPrimary care needs to be patient-centered, integrated, and interprofessional to help patients with complex needs manage the burden of medication-related problems. Considering the growing problem of polypharmacy, increasing attention has been paid to how and when medication-related decisions should be coordinated across multidisciplinary care teams. Improved knowledge on how integrated electronic health records (EHRs) can support interprofessional shared decision-making for medication therapy management is necessary to continue improving patient care.ObjectiveThe objective of our study was to examine how physicians and pharmacists understand and communicate patient-focused medication information with each other and how this knowledge can influence the design of EHRs.MethodsThis study is part of a broader cross-Canada study between patients and health care providers around how medication-related decisions are made and communicated. We visited community pharmacies, team-based primary care clinics, and independent-practice family physician clinics throughout Ontario, Nova Scotia, Alberta, and Quebec. Research assistants conducted semistructured interviews with physicians and pharmacists. A modified version of the Multidisciplinary Framework Method was used to analyze the data.ResultsWe collected data from 19 pharmacies and 9 medical clinics and identified 6 main themes from 34 health care professionals. First, Interprofessional Shared Decision-Making was not occurring and clinicians made decisions based on their understanding of the patient. Physicians and pharmacists reported indirect Communication, incomplete Information specifically missing insight into indication and adherence, and misaligned Processes of Care that were further compounded by EHRs that are not designed to facilitate collaboration. Scope of Practice examined professional and workplace boundaries for pharmacists and physicians that were internally and externally imposed. Physicians decided on the degree of the Physician-Pharmacist Relationship, often predicated by colocation.ConclusionsWe observed limited communication and collaboration between primary care providers and pharmacists when managing medications. Pharmacists were missing key information around reason for use, and physicians required accurate information around adherence. EHRs are a potential tool to help clinicians communicate information to resolve this issue. EHRs need to be designed to facilitate interprofessional medication management so that pharmacists and physicians can move beyond task-based work toward a collaborative approach.

Introduction 11 2. Methods 15 3. Context to the findings 21 4. Findings from the literature review 25 4.1 Impact on the research agenda 26 4.2 Impact on research design and delivery 30 4.3 Impact on research ethics 50 4.4 Impact on the public involved 53 4.5 Impact on researchers 64 4.6 Impact on research participants 69 4.7 Impact on the wider community 72 4.8 Impact on community organisations 78 4.9 Impact on implementation/change 79 4.10 Factors that influence the impact of involvement 84 4.11 Reflections from the literature on assessing the impact of public involvement 87 5. Discussion 91 Jargon buster 97 Appendices 102 References 106

The Evidence Alliance (EA) is a Canada-wide multi-stakeholder organization providing national-level support in knowledge synthesis, clinical practice guidelines development, and knowledge translation. With a mandate to deliver the best available evidence to inform health policy and improve patient care, the EA involves patients and their caregivers in its governance, research priority setting and conduct, and capacity building. To reflect on the experiences of patient involvement in its first three years, the organization conducted a self-study with 17 actively involved patient partners. They answered the Patient Engagement in Research Scale 22-item short form (PEIRS-22) and open-ended questions. Of the 15 respondents, 12 were women with a mean age of 62.6 years (SD 10.1). The mean PEIRS-22 score was 82.1 (SD 15.9), indicating perceived meaningful engagement. Analysis of the free-text answers identified three themes: ( i) communication: successes, changes, and improvements; ( ii) a respectful and welcoming environment; and ( iii) opportunities to learn and contribute. Patient partners noted the EA made genuine efforts to welcome them and value their contributions. They also identified a need for the organization to increase patient partner diversity. This self-study was perceived as rewarding as it provided a foundation for further growth in patient involvement within the organization.

Background Therapeutic interventions for people with inflammatory arthritis (IA) increasingly involve multidisciplinary teams and strive to foster patient‐centred care and shared decision making. Participation in health‐care decisions requires patients to assert themselves and negotiate power in encounters with clinicians; however, clinical contexts often afford less authority for patients than clinicians. This disadvantage may inhibit patients' involvement in their own health care. Objective To identify communication attributes, IA patients use to influence and negotiate their treatment with members of their health‐care network. Method A qualitative social network approach was used to analyse data from a larger study that investigated IA patients' overall experiences of multidisciplinary care. Fourteen patients with IA attended individual semi‐structured interviews. Researchers used thematic analysis to identify patterns of assertiveness and influence in the data. Results Participants experienced loss of identity, control and agency in addition to the physical symptoms of IA. However, they had a sense of personal responsibility for managing their health care. Perceptions of health‐care team support enhanced patients' influence in treatment negotiations. Notably, there appeared to be an underlying tension between being empowered or disempowered. Discussion and conclusions The findings have significant implications for treatment decision communication approaches to IA care. A social network perspective may provide a pathway for clinicians to better understand the complexities of communication with their patients. This approach may reduce unequal power dynamics that occur within clinician/patient interactions and afford people with IA agency, control and affirmation of identity within their health‐care network.

The Strategy for Patient Oriented Research (SPOR) Evidence Alliance is a research initiative in Canada whose mission is to promote the synthesis, dissemination, and integration of research results into health care and public health decision-making and clinical practice. The aim of this paper is to ( i) outline the governance and committee structure of the SPOR Evidence Alliance, ( ii) outline the procedures for patient and health system decision-maker engagement, and ( iii) present the capacity-building strategy for governance members. The governance structure includes the following six standing committees: the International Advisory Committee, Steering Committee, Executive Committee, Knowledge Translation Committee, Partnerships Committee, and Training and Capacity Development Committee. The guiding principles embrace inclusiveness, support, mutual respect, transparency, and co-building. There are currently 64 committee members across the six committees, 13 patient and public partners, 8 health system decision-makers, 7 research trainees, and 36 researchers. A multi-disciplinary and diverse group of people in Canada are represented from all regions and at various levels of training in knowledge generation, exchange, and translation. This collaborative model makes the SPOR Evidence Alliance strong and sustainable by leveraging the knowledge, lived experiences, expertise, skills, and networks among its 342 members and 12 principal investigators.