Community Engagement Workshop (2024)

Executive Summary

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The Community Engagement Workshop was a 1.5-day event in which the NIH Common Fund invited the community (e.g., data scientists, educators, community engagement specialists, advocates) to provide feedback on ways to improve the utility and interoperability of NIH Common Fund data resources and explore effective outreach approaches and develop strategies to help these communities utilize Common Fund resources more effectively. The event included a series of panel sessions and interactive hybrid breakout sessions, where virtual attendees were encouraged to participate in the discussion. 

Throughout the workshop, attendees maintained a solution-focused enthusiasm despite tackling several complex topics. The event concluded with a list of recommendations for the NIH Common Fund to consider. 

Below are key takeaways that were discussed during the workshop:

1. Representation: The NIH Common Fund should ensure that there is adequate representation in the data, increase accountability and ethical responsibility among the research community, and foster transparency and clarity for how data is used. This may be accomplished by:
   • Engaging communities and community representatives at every stage of the research process (with active involvement in data collection and dissemination); 
   • Providing clear communication about how data is collected and used through plain language summaries;
   • Improving tools to help communities, as well as researchers, understand and interact with data effectively. 
2. Outreach: The NIH Common Fund should improve its community engagement and outreach strategies by:
   • Directly engaging with communities to establish long lasting bidirectional relationships beyond research funding tenures;
   • Leveraging inclusive language;
   • Using a range of communication strategies and modalities to share information, for example 10-minute videos tailored to a particular question or audience may be more effective than hosting large, generalized webinars.
3. Accessibility: The NIH Common Fund should improve the data use and accessibility of its data resources, some recommendations include:
   • Curating data visualizations to incorporate colorblind-friendly color palettes and large, legible subtitles can make data more accessible to users with disabilities or other needs;
   • Leveraging existing organizations and resources already doing work in data science and accessibility;
   • Establishing feedback mechanisms for both internal and external NIH data users, this could be done through a centralized service hub. 
4. Training: The NIH Common Fund should address the training and educational needs of the data community by:
   • Leveraging qualitative research methods to identify the training needs of individual communities and how best to implement those trainings;
   • Using interactive dashboards to allow users the opportunity to gain experience exploring and visualizing data; 
   • Adopting microlearning sessions and apply user rewards (e.g., earning points, badges, scoring on leaderboards) to promote learner engagement and participation;
   • Allowing for asynchronous learning through pre-recorded lectures in additional to interactive learning sessions.

Several themes occurred frequently throughout the workshop which highlighted their importance. Accountability throughout the research and data collection process was noted across multiple sessions. The need for transparency and tailored communications were also encouraged. Finally, attendees emphasized that to successfully achieve its goals the NIH Common Fund should focus on the development of lasting bidirectional relationships with the community. Community partners, or community advisory boards, should have a larger role in directing research across the entire lifecycle. 

Read the full summary of the event: Community Engagement Workshop (2024) Summary