Giving patients a voice: a participatory evaluation of patient engagement in Newfoundland and Labrador Health Research

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Introduction Engaging with patients about their lived experience of health and illness and their experience within the healthcare system can help inform the provision of care, health policies and health research. In the context of health research, however, operationalizing the levels of patient engagement is not straightforward. We suggest that a key challenge to the routine inclusion of patients as partners in health research is a lack of tangible guidance regarding how this can be accomplished. Methods In this article, we provide guidance on how to codesign and operationalize a concrete patient engagement plan for any health research project. Results We illustrate a seven‐step approach using the example of a national clinical trial in Canada and provide a patient engagement planning template for use in any health research project. Conclusion Such concrete guidance should improve the design and reporting of patient engagement in health research. Patient or Public Contribution The De‐Implementing Wisely Research group is informed by a national 9‐member patient partner council (PPC). The research team includes three lead patient partners who are coinvestigators on the grant that funds the program of research. Members of the council advise on all aspects of the study design and implementation. The ideas presented in this paper were informed by regular communication and planning with the PPC; specific contributions of lead patient partner authors are outlined as follows: Brian Johnston, Susan Goold and Vanessa Francis are patient partners with a wide breadth of experience in the healthcare system and health research projects. The guidance in this article draws on their lived and professional expertise. All patient partner authors contributed to the planning of the manuscript, participated in meetings to develop content and provided critical manuscript edits and comments on drafts.

Section: Resultsmentioning

confidence: 99%

Operationalizing a patient engagement plan for health research: Sharing a codesigned planning template from a national clinical trial

Etchegary

Pike

Patey

et al. 2021

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“…We speculate this divergence could be partially explained by the focus of PPEET on engagement initiatives by health system organizations, while the PEIRS‐22 focuses on engagement initiatives specific to research. Using the PEIRS‐22 might address the issue of little variability being achieved when using individual PPEET items 51 …”

Section: Discussionmentioning

confidence: 99%

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

Hamilton

Hoens

McKinnon

et al. 2021

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.

“…The co‐creation of appropriate measurement tools requires further investigation and flexible approaches. Mixed methods and multiple tools are needed as one survey will not be able to capture the complexity and impact of patient engagement 45 . Longitudinal research is needed in this area as it takes time before impacts become evident.…”

Section: Discussionmentioning

confidence: 99%

Evaluation of patient engagement in medicine development: A multi‐stakeholder framework with metrics

Vat

Finlay

Robinson

et al. 2021

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Background Patient engagement is becoming more customary in medicine development. However, embedding it in organizational decision‐making remains challenging, partly due to lack of agreement on its value and the means to evaluate it. The objective of this project was to develop a monitoring and evaluation framework, with metrics, to demonstrate impact and enhance learning. Methods A consortium of five patient groups, 15 biopharmaceutical companies and two academic groups iteratively created a framework in a multi‐phase participatory process, including analysis of its application in 24 cases. Results The framework includes six components, with 87 metrics and 15 context factors distributed among (sub)components: (a) Input: expectations, preparations, resources, representativeness of stakeholders; (b) Activities/process: structure, management, interactions, satisfaction; (c) Learnings and changes; (d) Impacts: research relevance, study ethics and inclusiveness, study quality and efficiency, quality of evidence and uptake of products, empowerment, reputation and trust, embedding of patient engagement; (e) Context: policy, institutional, community, decision‐making contextual factors. Case study findings show a wide variation in use of metrics. There is no ‘one size fits all’ set of metrics appropriate for every initiative or organization. Presented sample sets of metrics can be tailored to individual situations. Conclusion Introducing change into any process is best done when the value of that change is clear. This framework allows participants to select what metrics they value and assess to what extent patient engagement has contributed. Patient contribution Five patient groups were involved in all phases of the study (design, conduct, interpretation of data) and in writing the manuscript.