Lay Stakeholder Representatives in Science and Research


    The Lay Stakeholder is a volunteer without formal training as a scientist who possesses a strong interest in advancing cardiovascular, cerebrovascular and brain health research, with a focus on overall health and well-being across the lifespan. Interest might be based on intimate experience as a survivor, family member, caregiver, or advocate.

     


    Lay Stakeholder Engagement is Vital to AHA Science and Research

    • Increases the accountability and transparency of the research process.
    • Provides real-world understanding of what most impacts those affected by cardiovascular and cerebrovascular diseases and/or disorders.
    • Helps shape and influence the culture of the research agenda and strengthens its impact on the mission.
    • Bridges the gap between scientists and patients to alleviate barriers in understanding the focus of why research is necessary.
    • Gives voice to the issues stakeholders think are most important.
    • Integrates a diverse range of views (researchers, health professionals and service-user representatives) so research becomes more effective.
    • Improves understanding of the benefits and burdens of patients in research studies.
    • Informs others of the human dimension of research and its outcome.
    • Prompts a sense of urgency for finding cures and more effective prevention, diagnosis and treatments.

    Benefits to Lay Stakeholders:

    • Increased awareness and respect for the importance of the research enterprise.
    • Demystify the research process for other non-scientists.
    • Gain confidence in the rigor of AHA’s selection of research projects.
    • Satisfaction of contributing to a cure for the prevention of cardiovascular and cerebrovascular diseases and/or disorders.
    • Awareness that real-world lay stakeholder experience can influence the direction of science.

    Benefits to Scientists:

    • Clearer connection between research focus and patients.
    • Respect for the patient's voice.
    • Broader perspective for connecting science with patients.
    • Enhances more patient-centered research.
    • Minimizes scientists' intellectual biases regarding patient involvement.

     


    Lay Stakeholder Volunteer Requirements

    The AHA strives for a demographically diverse group of qualified Lay Stakeholders who have intimate experience with cardiovascular and/or cerebrovascular disease or disorders from communities across the country. When possible, Lay Stakeholders are assigned to join review committees with which they are specifically suited and have expressed an interest. See the full job description.

    • Survivor/Patient
    • Caregiver/Advocate/Thought Leader

     

    Contact: Elizabeth Cooper or Angela McCarty

Lay Stakeholders' Role in Science and Research

A Lay Stakeholder (non-scientist) volunteer is an individual without formal training as a scientist who has a strong interest in advancing AHA-focused science and healthcare. Engagement is usually based on intimate experience with cardiovascular or cerebrovascular disease or disorder as a survivor, family member, caregiver, or advocate.

Lay Stakeholder Science and Research Task Force

The AHA Lay Stakeholder Task Force on Science and Research has broad responsibility for the engagement of lay stakeholders in all aspects of the AHA research enterprise.

2023-24 Members

  • Bernie Dennis, chairperson
  • Mary Ann Bauman, M.D.
    Elvira Dsouza
    Sandra Eason-Perez
    Ronda Johnson
    Kathleen Linta
    Ronald Perez
    Sue Townsel

Lay Stakeholder Science and Research Awards and Recognition 2021

Lay stakeholders serve alongside scientists and researchers in activities that include peer review, oversight advisory, statement and guideline writing, research seminars and scientific meetings. Patient advocate participation in science operations has grown from 14 volunteers in 2015 to 124 in 2020 to now more than 160 vetted volunteers willing to serve. In 2021, the AHA recognized volunteers for their outstanding service.

View a recording of the recognition ceremony.

Library

Newsletters: Read about Lay Stakeholder in Science and Research Task Force activities, member profiles, and volunteer opportunities.

 Issue 11 - Feb 2022
 Issue 12 - June 2022
 Issue 13 - Summer 2023
 
 

Lay Stakeholders in Science and Research Initiative: A Science Advisory From the American Heart Association | Circulation (ahajournals.org)

Contact Us

Program questions / inquiries,
call 214-360-6107 (option 1)

Lay Volunteer Interest Form

Sign up to let us know of your interest in AHA Research volunteer opportunities.

Learn more: Click on this Introduction to Lay Stakeholders in Science and Research presentation:

AHA logo and the words AHA lay stakeholders in science and medicine