Shortening and validation of the Patient Engagement In Research Scale (PEIRS) for measuring meaningful patient and family caregiver engagement.

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.

Development and pre-testing of the Patient Engagement In Research Scale (PEIRS) to assess the quality of engagement from a patient perspective.

OBJECTIVES: To 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. METHODS: Our 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. RESULTS: One 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. CONCLUSIONS: We developed a 37-item self-reported questionnaire that has demonstrated preliminary content and face validity for assessing the quality of patient engagement in research.

An empirically based conceptual framework for fostering meaningful patient engagement in research.

BACKGROUND: Patient engagement in research (PEIR) is promoted to improve the relevance and quality of health research, but has little conceptualization derived from empirical data. OBJECTIVE: To address this issue, we sought to develop an empirically based conceptual framework for meaningful PEIR founded on a patient perspective. METHODS: We 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. RESULTS: Participants' 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. CONCLUSIONS: The 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.