Background: Increasingly researchers are partnering with citizens and communities in research; less is known about research impacts of this engagement. EMBOLDEN is an evidence-informed, mobility-promoting intervention for older adults co-designed by a 26-person Strategic Guiding Council (SGC) of health/social service providers and older adult citizens. This study evaluated research partners' perceptions of engagement strategies, the engagement context, strengths, areas for improvement, as well as the impacts of the guiding council on older-adult identified priority areas.
Methods: This study was guided by developmental evaluation, working in partnership with four older adult SGC members who helped to set evaluation priorities, decide methods, and adapt patient-centred evaluation tools. Data sources included a questionnaire, focus groups and document analysis of meeting notes from 16 SGC meetings that took place between December 2019 and February 2022. A thematic approach to analysis guided the coding of focus group transcripts and SGC meeting notes. Convergent mixed methods guided the integration and presentation of qualitative and quantitative data sources in a joint display of evaluation results.
Results: Of 26 SGC members, nine completed the evaluation squestionnaire, and five participated in focus groups. Around two thirds of the SGC commonly attended each meeting. EMBOLDEN's SGC was structured to include a diverse group (across gender, ethnicity and discipline) of older adults and service providers, which was perceived as a strength. Engagement processes were perceived as inclusive and well-facilitated, which stimulated discussion at meetings. Advantages and disadvantages of engaging with the SGC virtually, as compared to in-person (as was the case for the first 3 SGC meetings) were also discussed. Impacts of the SGC were identified across preparatory, execution phase and translational stages of research. Impacts of SGC involvement on members were also described.
Conclusion: Older adult research partners played an important role designing, implementing, and evaluating co-design approaches in this study. Older adults and service providers can make important contributions to the design, delivery and sharing results of health research through their lived expertise and connections to community. This project contributes to the growing field of citizen and community engagement in research by offering a participatory approach to engagement evaluation that considers diversity, satisfaction, and impact.
Keywords: Citizen partners; Co-design; Community-based; Evaluation; Older adults; Patient and public involvement; Patient engagement; Patient-oriented research; Stakeholder engagement.
It is becoming common for researchers to ask patients and caregivers to become involved with their studies as partners. By partnering with people who have first-hand experience with a condition, researchers hope their studies will be more relevant, run efficiently and have more impact than studies designed by researchers alone. Over the last twenty years, there has been a significant increase in the number of published papers that involve patients and caregivers, but few papers mention what changed because of this involvement. Researchers need to know the best ways to involve patients and caregivers and the impact of doing so.This study aimed to find out how a council of older adults (OAs) and service providers (SPs) impacted a study about collaboratively designing and testing a mobility intervention. This study aimed to find out how council members felt about their involvement in this study, by asking them what went well and what could have been improved.This study used a questionnaire, focus groups and analyzed council meeting notes to inform this study. Four OA council members helped design the study, decide research methods, and adapt wording of questions (focus groups, questionnaire). Between 19% and 35% of council members completed evaluation activities. They felt the study strengths were the diversity of the council, and a welcoming environment for discussion. The council impacted how the study was designed, carried out and how results were shared. Results from this study can improve patient partnership engagement, experiences, and impacts in future studies.
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