Lay Stakeholders in Science and Research Initiative: A Science Advisory From the American Heart Association.

Area of Science:

• Cardiovascular Research
• Health Policy
• Patient Advocacy

Background:

• The American Heart Association (AHA) is a leading non-profit funder of cardiovascular and cerebrovascular disease research.
• For seven decades, the AHA has supported independent scientific research to reduce disease-related death and disability.
• In 2014, the AHA initiated a pilot program to involve lay stakeholders in its research operations.

Purpose of the Study:

• To assess the impact of including lay stakeholders (patients, caregivers, advocates) in the AHA's research and science operations.
• To determine if lay perspectives improve decisions regarding research funding, direction, and scientific guidelines.
• To evaluate the framework, recruitment, training, and integration of lay stakeholders.

Main Methods:

• Developed a framework defining lay stakeholders and outlining recruitment, training, and integration policies.
• Established metrics for evaluating the initiative's effectiveness over time.
• Implemented creative engagement strategies to foster collaboration between lay volunteers and scientists.

Main Results:

• Program assessments have been consistently positive, indicating successful integration and collaboration.
• The benefits of lay-scientist collaboration have exceeded the AHA's initial expectations.
• Identified areas for future improvement in lay stakeholder engagement and scientist communication.

Conclusions:

• Lay stakeholder involvement significantly enhances cardiovascular and cerebrovascular research.
• The AHA will continue to expand and diversify lay volunteer engagement in its scientific endeavors.
• Strengthening lay-scientist collaboration is crucial for advancing research, improving public health communication, and maintaining donor trust.