Content validation of a quantitative stakeholder engagement measure

Goodman, Melody S.; Ackermann, Nicole; Bowen, Deborah J.; Thompson, Vetta L. Sanders

doi:10.1002/jcop.22239

Cited by 38 publications

(59 citation statements)

References 35 publications

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“…more relevant to participants who are engaged in projects that are in or near the dissemination of the collaborative effort. The general acceptability of items suggests that the principles used to guide item selection are acceptable to the community members likely to be encountered or to participate in stakeholder-engaged research and assessment [19], although participants suggested changes in words and terms, as well as item structure. Minimal concerns were related to response options.…”

Section: Discussionmentioning

confidence: 99%

“…A Delphi Process involves administration of multiple rounds of individual online and/or in-person surveys, with participant feedback on aggregated group responses for each round until reaching majority agreement on issues [18]. A five-round, modified Delphi Process was used to reach consensus on engagement principles and items for inclusion, elimination, and revision [19,20]. The number of survey items on each scale (quantity and quality) was reduced from 48 to 32.…”

Section: Item Selectionmentioning

confidence: 99%

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Community partners’ responses to items assessing stakeholder engagement: Cognitive response testing in measure development

et al. 2020

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Background Despite recognition of the importance of stakeholder input into research, there is a lack of validated measures to assess how well constituencies are engaged and their input integrated into research design. Measurement theory suggests that a community engagement measure should use clear and simple language and capture important components of underlying constructs, resulting in a valid measure that is accessible to a broad audience. Objective The primary objective of this study was to evaluate how community members understood and responded to a measure of community engagement developed to be reliable, valid, easily administered, and broadly usable. Method Cognitive response interviews were completed, during which participants described their reactions to items and how they processed them. Participants were asked to interpret item meaning, paraphrase items, and identify difficult or problematic terms and phrases, as well as provide any concerns with response options while responding to 16 of 32 survey items. Results The results of the cognitive response interviews of participants (N = 16) suggest concerns about plain language and literacy, clarity of question focus, and the lack of context clues to facilitate processing in response to items querying research experience. Minimal concerns were related to response options. Participants suggested changes in words and terms, as well as item structure. Conclusion Qualitative research can improve the validity and accessibility of measures that assess stakeholder experience of community-engaged research. The findings suggest wording and sentence structure changes that improve ability to assess implementation of community engagement and its impact on research outcomes.

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Section: Discussionmentioning

confidence: 99%

Section: Item Selectionmentioning

confidence: 99%

Community partners’ responses to items assessing stakeholder engagement: Cognitive response testing in measure development

et al. 2020

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“…Although best practices and research for assessing patient group engagement are still evolving, this type of collaboration is recognized as having the potential to significantly improve the clinical trial enterprise [2,18]. Ensuring that collaboration is focused on areas where the greatest benefit can be achieved for everyone involved, given limited resources, is an important step in the development of strong partnerships to improve the relevance of information gathered from clinical trials.…”

Section: Discussionmentioning

confidence: 99%

Development and Application of a Patient Group Engagement Prioritization Tool for Use in Medical Product Development

Perry

Dombeck

Smalley

et al. 2020

Ther Innov Regul Sci

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Introduction Patient group engagement is increasingly used to inform the design, conduct, and dissemination of clinical trials and other medical research activities. However, the priorities of industry sponsors and patient groups differ, and there is currently no framework to help these groups identify mutually beneficial engagement activities. Methods We conducted 28 qualitative, semi-structured interviews with representatives from research sponsor organizations (n = 14) and patient groups (n = 14) to determine: (1) how representatives define benefits and investments of patient group engagement in medical product development, and (2) to refine a list of 31 predefined patient group engagement activities. Results Patient group and sponsor representatives described similar benefits: engagement activities can enhance the quality and efficiency of clinical trials by improving patient recruitment and retention, reduce costs, and help trials meet expectations of regulators and payers. All representatives indicated that investments include both dedicated staff time and expertise, and financial resources. Factors to consider when evaluating benefits and investments were also identified as were suggestions for clarifying the list of engagement activities. Discussion Using these findings, we refined the 31 engagement activities to 24 unique activities across the medical product development lifecycle. We also developed a web-based prioritization tool (https://prioritizationtool.ctti-clinicaltrials.org/) to help clinical research sponsors and patient groups identify high-priority engagement activities. Use of this tool can help sponsors and patient groups identify the engagement activities that they believe will provide the most benefit for the least investment and may lead to more meaningful and mutually beneficial partnerships in medical product development.

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“…Shortly after Boivin et al’s 2018 systematic review was published, 14 the Patient Engagement In Research Scale (PEIRS) was published as the first tool designed to measure the degree of meaningful patient engagement in research on project teams 16 . The PEIRS is based on an empirical conceptual framework enhanced with a literature review, 5 recognized as a promising and important tool for the evaluation of patient and family caregiver engagement in research 13,17‐20 . The framework outlines the key components of and defines meaningful patient engagement in research as the planned, supported and valued involvement of patients in the research process, which facilitates their contributions and offers a rewarding experience 5 .…”

Section: Introductionmentioning

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

Health Expectations

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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.

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Content validation of a quantitative stakeholder engagement measure

Cited by 38 publications

References 35 publications

Community partners’ responses to items assessing stakeholder engagement: Cognitive response testing in measure development

Community partners’ responses to items assessing stakeholder engagement: Cognitive response testing in measure development

Development and Application of a Patient Group Engagement Prioritization Tool for Use in Medical Product Development

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

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