Table 4.

Engagement contributions identified as facilitating the use of study findings by use case project or project set

Project	Engagement approach	Engagement Contributions identified as facilitating use of study findings
Use case 1: Integration of CER study findings
Integration Research Project 1	Multiple perspective advisory group; intentionally hired community member as research staff	• Improved response to study outreach • Facilitated dissemination by connecting PI to a local community group; this group started sharing the materials at regular, community events. • Continued to work with the project team to implement study findings and develop a new intervention for caregivers
Integration Research Project 2	Single perspective advisory group; Input from social media survey and online focus group	• Recommended how to modify the approach for identifying cohort members, which increased the cohort size by about 30% • Prioritized which data and outcomes would be most meaningful to report out for the community • Recommended journals that would have the largest visibility • Clinical partner facilitated getting findings cited in two sets of forthcoming clinical guidelines after CER study
Integration Research Project 3	Multiple perspective advisory group	• Recommended focusing study aims on patient-clinician communication • Suggested both phone and mail surveys for data collection to reach study participants who may be hard of hearing, thus expanding the reach of the study • At least one advisory group member co-authored every publication • Co-authors prioritized which secondary data analyses would be most meaningful for publication • Directly advocated for the use of intervention at meetings with government agency
Use case 2: Implementation of findings beyond the CER study
Implementation Project Set 1
Research Project	Single perspective advisory group; Ad hoc engagement with clinicians	• Helped develop and then adapt a feasible and easy-to-access program prior to and during the research project
Implementation Project	Multiple perspective advisory group, working groups	• Helped adapt the intervention, including broadening it for different diagnoses • Connected researchers with advocacy organizations • Helped problem solve challenges (e.g., low completion rates)
Implementation Project Set 2
Research Project	Multiple perspective advisory group	• Helped to develop a feasible and easy-to-use program prior to research project • Adapted the intervention for the study population • Helped to problem solve when the study encountered low survey completion rates
Implementation Project	Multiple perspective advisory group	• Helped determine next steps, based on study findings, for the project • Developed messaging and outreach strategies for implementation sites • Connected researchers with contacts at implementation sites • Adapted in-person training materials to an online training format
Implementation Project Set 3
Research Project	Patient co-investigators; professional society; input from interviews	• Patient co-investigators helped write proposal, determine study design, develop the survey, and problem solve when there were recruitment and retention issues • Added quality of life as an outcome based on interviews
Implementation Project	Patient co-investigator; professional society; site-based patient representatives	• Helped to determine next steps for findings and provided input on program to improve prescribing practices • Adapted program and developed educational modules for implementation project
Use case 3: Active Dissemination of CER findings by external parties
Dissemination Project Set 1
Research Project	Multiple perspective advisory group; intentionally hired community member as research staff; input from interviews and focus groups	• Developed intervention prior to research project based on input from interviews and focus groups with community members • Improved feasibility by advising on recruitment and approaches • Reviewed and adapted all study materials including the intervention • Interpreted study results • Co-developed publications
Engagement Award	Patient co-investigator; multiple perspective advisory group; partner-led work groups	• Adapted and created new materials for the intervention • Actively distributed educational materials using a variety of in-person and virtual methods
Dissemination Project Set 2
Research Project	Multiple perspective advisory group	• Tailored intervention materials to better address the needs of patients • Advised on the relevance of the intervention
Engagement Award	Included patients as team members; representatives from patient organizations, professional societies, and member organizations	• Assisted in conducting focus groups which informed the dissemination strategy • Adapted and posted educational materials • Disseminated materials via email outreach
Dissemination Project Set 3
Research Project	Multiple perspective advisory group	• Provided guidance and oversight of the project during its implementation • Assisted with decision making and helped to resolve problems during CER study
Engagement Award	Multiple perspective advisory group	• Convened a planning committee of clinical leaders to provide guidance and input on the conference sessions • Involved patients in presentations which gave a real-world perspective on the nuances of implementation • Drafted a research framework for advancing the evidence generation necessary for widespread, population-based implementation strategies
Dissemination Project Set 4
Research Project	Patient co-investigator; Multiple perspective advisory group; input from town hall	• Developed intervention prior to research project based on input from community town halls • Developed culturally tailored educational materials • Used their connections to help recruit hundreds of community ambassadors • Interpreted study findings
Engagement Award	Hired community member as research staff; representatives from organizational partners	• Adapted materials from the research project for dissemination • Actively distributed educational materials using a variety of in-person and virtual methods