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

Abstract

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.

Engagement of people with lived experience of dementia advisory group and cross-cutting program: reflections on the first year

“…Existing resources [ 29 – 31 ] were used to identify key domains and Advisory Group members were invited to share their perspectives on the most relevant questions, including by voting on existing questions or suggesting their own. An existing tool, the Patient Engagement in Research Scale (PEIRS-22) [ 32 ], was subsequently located and Advisory Group responses were mapped to this validated tool. The PEIRS-22 was selected, but with two additional questions, from the full (37-item) PEIRS and free-text questions.…”

Toward a digital citizen lab for capturing data about alternative ways of self-managing chronic pain: An attitudinal user study

“…To remedy, based on a scoping review of digital health science initiatives, Fu, Gray and Borda have suggested that participatory design of research data management systems would be an important step in overcoming hesitancy about the reliability and reproducibility of citizen health data collection initiatives ( 75 ). Hamilton et al's patient engagement research has identified that procedural requirements which ensure that data collection is consistent with the needs of both research and patients—and make it possible to do research at their own pace and with the ability to express their own views—are important to the design of citizen research practices ( 76 ).…”

Patient engagement in the SPOR Evidence Alliance: Reflection and learnings

“…Quality of partnership was assessed with the Patient Engagement In Research Scale 22-item short form (PEIRS-22) (Hamilton et al 2021). The original PEIRS (37 items) was developed based on an empirical conceptual framework and a literature review (Hamilton et al 2018c).…”