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Stakeholders

Stakeholder (or community) engagement is a broad term that encompasses involving individuals, communities, and other stakeholders in the design, conduct, dissemination, and implementation of research.

  • Stakeholder Engagement

    Research registry stakeholders 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: Stakeholder Engagement in Research

    Southern California CTSI:

    CTSA Community Engagement Key Function Committee Task Force on the Principles of Community Engagement: Principles of Community Engagement (Second Edition)

    NC TraCS Institute: Fiscal readiness for community-academic partnered research – Academic Researcher’s and Community Partner’s Guides

  • Why Engage Stakeholders?

    Early stakeholder 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 stakeholder 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 stakeholders 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 stakeholder engagement into their studies.

    What about Identifying Stakeholders?

    Several resources for identifying stakeholders are listed below. Although some of these tools were created for use outside of research, they provide useful context for identifying research registry stakeholders.

  • Building Stakeholder Networks

    Early stakeholder engagement includes both conducting formative research and developing your stakeholder network. Stakeholder 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 stakeholders 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 stakeholder 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 stakeholder network include:

    • Reaching out to organizations serving your target population
    • Attending public events involving stakeholders, 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 stakeholders are listed in the table below:

    Strategies for Building Strong Relationships with Stakeholders Examples of Implementation
    Maintain communication with stakeholders throughout and between studies
    • Provide regular updates on the registry (see “Follow Up Communication”)
    • Reach out to stakeholders between studies to learn about community priorities and discuss ideas for future studies
    • Regularly attend meetings or events where stakeholders are present
    Listen to and incorporate stakeholder feedback into registry processes
    • Share findings from your formative work with stakeholders
    • Ask stakeholders for feedback on how to incorporate results of formative work into your registry
    • Provide stakeholders with a summary of the ways in which you are incorporating their feedback into registry processes
    Find ways to give back to the community
    • Share results of research studies using registry data with stakeholders
    • Ask stakeholders how they would like to learn about research results (e.g., report, presentation, conversation), and use dissemination methods that work well for them
    • Help stakeholders incorporate relevant research findings into their work
    • Offer technical assistance, training or presentations in your area of expertise to stakeholder groups
    Strategies for Building Strong Relationships with Stakeholders Examples of Implementation
      Maintain communication with stakeholders throughout and between studies  
    • Provide regular updates on the registry (see “Follow Up Communication”)
    • Reach out to stakeholders between studies to learn about community priorities and discuss ideas for future studies
    • Regularly attend meetings or events where stakeholders are present
      Listen to and incorporate stakeholder feedback into registry processes  
    • Share findings from your formative work with stakeholders
    • Ask stakeholders for feedback on how to incorporate results of formative work into your registry
    • Provide stakeholders with a summary of the ways in which you are incorporating their feedback into registry processes
      Find ways to give back to the community  
    • Share results of research studies using registry data with stakeholders
    • Ask stakeholders how they would like to learn about research results (e.g., report, presentation, conversation), and use dissemination methods that work well for them
    • Help stakeholders incorporate relevant research findings into their work
    • Offer technical assistance, training or presentations in your area of expertise to stakeholder groups