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 assess the efficacy of a multifaceted counseling intervention at improving physical activity participation and patient outcomes. Methods. We recruited people with rheumatoid arthritis (RA) or systemic lupus erythematosus (SLE). In weeks 1-8, the immediate group received education and counseling by a physical therapist, used a Fitbit and a web application to obtain feedback about their physical activity, and received 4 follow-up calls from the physical therapist. The delay group received the same intervention in weeks 10-17. Participants were assessed at baseline and at weeks 9, 18, and 27. The primary outcome was time spent in moderate/vigorous physical activity (MVPA; in bouts of ≥10 minutes) measured with a SenseWear device. Secondary outcomes included step count, time in sedentary behavior, pain, fatigue, mood, self-management capacity, and habitual behaviors. Results. A total of 118 participants enrolled. The adjusted mean difference in MVPA was 9.4 minutes/day (95% confidence interval [95% CI]-0.5, 19.3, P = 0.06). A significant effect was found in pain (-2.45 [95% CI-4.78,-0.13], P = 0.04) and perceived walking habit (0.54 [95% CI 0.08, 0.99], P = 0.02). The remaining secondary outcomes improved but were not statistically significant. Post hoc analysis revealed a significant effect in MVPA (14.3 minutes/ day [95% CI 2.3, 26.3]) and pain (-4.05 [95% CI-6.73,-1.36]) in participants with RA but not in those with SLE. Conclusion. Counseling by a physical therapist has the potential to improve physical activity in people with inflammatory arthritis, but further study is needed to understand the intervention effect on different diseases. We found a significant improvement in pain, suggesting that the intervention might have a positive effect on symptom management. ClinicalTrials.gov identifier: NCT02554474.

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.

Introduction: In collaboration with the Alberta Medical Association's Physician Learning Program we developed individualized physician reports and held a group feedback session on rheumatoid arthritis (RA) performance measures (PM) to facilitate treat-to-target (T2T) strategies and evaluated physician experiences with this process. Methods: 5 PMs addressing T2T concepts from an established Canadian quality framework were operationalized for physician practice reports at 2 university-affiliated rheumatology clinics. Rheum4U, a quality improvement and research platform, was the data source. The audit results were reviewed in a facilitated group feedback session. Rheumatologists provided experiential feedback on the process through survey and/or an interview. Transcripts from interviews were analyzed using a 6-step thematic analysis. Results: 11 of 12 eligible rheumatologists consented to receive practice reports and provided feedback through surveys (n = 5) and interviews (n = 6). The practice reports from Rheum4U