Community Engagement
Community engagement is a broad term that encompasses involving individuals, communities, and other partners in the design, conduct, dissemination, and implementation of research.
Community Engagement
Research registry interest holders can include anyone who may be affected by or have an interest in the registry, including: potential participants, their families, and their communities; organizations and healthcare providers that serve these individuals or communities; researchers who may collaborate or use registry data; and policy makers who have an interest in the results of the research.
Relevant Resources: Community Engagement in Research
NC TraCS Institute: Patient and Community Engagement in Research (PaCER) program
Why Engage Interest Holders?
Interest holders are people or organizations who are invested in and may be affected by the research.
Early interest holder engagement is an important step in the development of any research project, and especially so with long-term initiatives like research registries. There are many practical reasons for prioritizing interest holder engagement in your research registry initiative. These include:
- Early engagement can lead to improved recruitment and retention, as you are more likely to develop processes that address the needs and priorities of your target population.
- By working with interest holders early in the planning process, you can ensure you are developing a registry that is seen as important and useful. You can prevent duplication of efforts, and ensure that your registry will be a novel and valuable contribution.
- Many funding agencies, such as PCORI and NIH, encourage or require researchers to incorporate interest holder engagement into their studies.
What about Identifying Interest Holders?
- Centers for Disease Control and Prevention: Program Evaluation for Public Health Programs: A Self-Study Guide – Step 1: Assess the Context
Building Interest Holder Networks
Early interest holder engagement includes both conducting formative research and developing your interest holder network. Interest holder engagement is extremely important as you are planning your registry, and continues to be important throughout your registry lifecycle.
Should Incentives be offered?
It is best practice to offer incentives to your interest holders to compensate them for their time and recognize their contributions to your project. Consider providing incentives such as cash or gift cards to stakeholders who serve on Community Advisory Boards or contribute to your project in other ways.
A strong interest holder network can help with:
- Spreading the word about the registry
- Providing ongoing feedback on your registry processes
- Trouble-shooting issues related to recruitment and retention
- Opening doors for potential collaboration
- Enhancing dissemination and implementation of results of studies using registry data
Examples of strategies for forming your interest holder network include:
- Reaching out to organizations serving your target population
- Attending public events involving interest holders, such as community forums
- Forming a community advisory board (CAB) to serve as formal advisors throughout your project
- Identifying and reaching out to possible research collaborators
Thinking of forming a Community Advisory Board? First review the Literature
In Community Advisory Boards in Community-Based Participatory Research: A Synthesis of Best Processes, Newman et al. (2011) outline a number of best practices for forming a Community Advisory Board (CAB). While their recommendations were written for Community-Based Participatory Research projects specifically, many can be applied to research registries. Processes they recommend include:
- Clarifying the purpose of the CAB and the roles of CAB members during the CAB formation process
- Developing operating procedures to guide CAB meetings and task completion
- Evaluating CAB processes using qualitative and quantitative methods
- Planning for future sustainability of the CAB
Maintaining Relationships
Building strong, lasting relationships with stakeholders requires a commitment from researchers. Examples of ways researchers can build strong relationships with interest holders are listed in the table below:
| Strategies for Building Strong Relationships with Interest Holders | Examples of Implementation |
|---|---|
| Maintain communication with interest holders throughout and between studies |
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| Listen to and incorporate interest holder feedback into registry processes |
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| Find ways to give back to the community |
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| Strategies for Building Strong Relationships with Interest Holders | Examples of Implementation | ||
|---|---|---|---|
| Maintain communication with interest holders throughout and between studies |
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| Listen to and incorporate interest holder feedback into registry processes |
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| Find ways to give back to the community |
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