Patient Representatives in Science and Research

Researchers learn the issues that patient representatives think are most important; the benefits and burdens of patients in research studies; and prompts a sense of urgency for finding cures and more effective prevention, diagnosis and treatments. Involved patient representative volunteers get to convey the human dimension of research and its outcomes, reinforce accountability and transparency of the research process, and help to convey why research is necessary.

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

Patient representative volunteers infuse into Heart Association science and research processes real-world understanding of what most impacts those affected by cardiovascular and cerebrovascular diseases and disorders. Integrating a wide range of views (researchers, health professionals and service-user representatives) into our research program helps strengthen its impact on the mission.

• Increase awareness and respect for the importance of the research enterprise.
• Demystify the research process for other non-scientists.
• Gain confidence in the rigor of the Association'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 patient advocates can influence the direction of science.