Top Things to Know: Lay Stakeholders in Science & Research Initiative

Published: June 28, 2021
  1. The Lay Stakeholder in Science and Research Initiative was developed so that lay stakeholders could add a unique and necessary perspective that would improve AHA’s decisions concerning research funding, research direction, and scientific guidelines.
  2. The initiative has created a volunteer recruitment and training program, established policies for incorporating lay stakeholders in science operations where viable, instituted creative ways to engage lay volunteers and foster lay and scientist cooperation, and has set metrics for evaluating the initiative over time.
  3. This statement describes the history and rationale of the program, its initiation and implementation, as well as program results and benefits to volunteer engagement, science and research operations, effective communication of research to the public, and respect of donors for the rigors of AHA’s research funding, scientific statements, and clinical practice guidelines.
  4. The role of the lay stakeholder is grounded in the AHA’s Inclusiveness and Ethics Policies, Guiding Values, and Research Enterprise 12 Essential Elements. The intent is to add a collaborative perspective to science that reflects the insights and concerns of patients, caregivers, the community, and research funders.
  5. Results of the program effort include development of the following five key steps:
    • Defining program expectations and assessment metrics
    • Soliciting support from staff and science volunteers
    • Selecting the right volunteers
    • Effectively training and developing volunteers
    • Maintaining volunteer engagement
  6. The first three key steps together ensured the program was well-constructed and planned with input from science volunteers and staff, and potential lay volunteers selected and recruited from a diverse population of persons with the experience and interest to participate at a the right level for the opportunity. One tool that was developed is the AHA website portal though which individuals can express an interest in volunteering. (https://www.heart.org/en/volunteer/opportunities.)
  7. The next steps of development included creation of tools to meet the goal of producing qualified volunteers who were happy and confident to perform in their roles, a pre-training assessment, role-specific training modules, communications plans, mentoring, and ongoing support.
  8. Some of the volunteer’s personal experiences are illustrative of the success of the process, including enthusiasm about learning the new process and content, enjoyment from working with scientists and other volunteers, and satisfaction at having made a valued contribution.
  9. Some of the challenges and lessons learned included increasing the variety of volunteer assignments to sustain their interest over time, implementing cross-departmental coordination with AHA staff, and ensuring personal and professional diversity.
  10. The importance of lay stakeholders to the AHA’s evolving mission cannot be overstated and will continue to strengthen the rigor and impact of its research funding, scientific statements and clinical practice guidelines.

View the summary for Lay Stakeholders in Science and Research Initiative

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Citation

Roach WH Jr, Bischoff JM, Dennis B, Donalson M, Dunbar SB, Hill D, Ng-Osorio J, Powers S, Wold LE; on behalf of the American Heart Association Research Committee. Lay stakeholders in science and research initiative: a science advisory from the American Heart Association [published online ahead of print June 28, 2021]. Circulation. doi: 10.1161/CIR.0000000000000999

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