Table 1.
Feedback was provided by stakeholders engaged locally at participating sites throughout the design and implementation phases of the project
| 1. During Project Design Phase: Early Engagement* | ||
|---|---|---|
| Stakeholder themes | Action | Impact |
| Anticipated Value: | ||
| Assess current research participation experience overall and for underrepresented groups | Design At-a-Glance Dashboard, built-in scoring, filter by participant characteristics | Able to analyze/act on data for groups, including those affected by disparities. Opportunity for transparency and trust building |
| Benchmark internally and with other CTSAs | Aggregate data to EPV Consortium Dashboard | Evidence-based, benchmarks, public-facing |
| Identify and sustain high scorers | Local analysis/actions | Evidence for best practices |
| Identify opportunities for enterprise-wide innovations | Consortium Dashboard and Learning Collaborative | Shared evidence base & use cases, opportunities to conduct multi-site clinical translational science |
| Measure pre/post innovation to assess the impact | Dashboard views of data over time, custom reports | Clinical Translational Science, accountability to stakeholders |
| Participants feel that their concerns matter C | Communicate before and after the survey fielding | Charge sites to return meaningful results |
| Participants can compare their experience to others’ C | Return results publicly | Charge sites to return meaningful results |
| Concerns: | ||
| Will groups engage? | Engage early, manage fears, leverage community engagement and outreach expertise at site | Imperfect sampling still provides valuable information |
| How to prioritize findings? | Develop performance improvement workflow, with stakeholders | Local autonomy |
| Will benchmarks compare apples to apples? | Standards optimize comparability | Validated tools, adherence to standards, filters |
| Risk of negative scores, reputational harm to the investigator or to the institution | Local governance & data-sharing decisions; Data Use Agreement | Experiences are real even if unmeasured; better to know |
| Teams might perceive scores as punitive | Constructive performance improvement models | Be able to share use cases, best practices |
| Are the questions relevant to participants? C | Core questions from validated participant-centered research; Free text fields for additional input | Sites may add custom questions and free text fields retained, and some sites include links to formal complaint workflow |
| The response might damage the relationship with the research team C | Communicate privacy protections early and often | Dashboard design suppresses results in any cell with<5 responses and could risk the re-identification of an individual |
| Lack of transparency and accountability for results and actions taken C | Communicate plan to return results; share results and actions; engage stakeholders in analysis and action | Sites develop public-facing websites for return of results; sites develop workflow for performance improvement |
| Potential for tokenism C | Engage community and trusted proxies; be accountable | Public return of results pages; aim for transparency |
Stakeholders included institutional and community members, such as institutional and research leadership, investigators and faculty, privacy/IRB staff, research coordinators and nurses, patients, research participants, community representatives and liaisons, and others. Comments and themes were not linked to specific individuals during reporting.
C Themes raised at an engagement meeting that included one or more community members/advocates/research participants/patient/patient representatives. Community meetings ranged in attendance from 5 to>50.
Attendee roles and affiliations membership were not tabulated at stakeholder meetings held in the first 6 months of the project.