Citizen Scientist Think Tank™
The Citizen Scientist Think Tank ™ was developed by The American Heart Association/American Stroke Association (AHA/ASA) with the purpose of incorporating a patient-centered approach to cardiovascular and stroke programs/research. The group is made up of diverse individuals from different parts of the United States who have experienced cardiovascular disease or stroke, or provided care to cardiovascular disease or stroke patients/survivors. These individuals have demonstrated their willingness to break down the walls that exist between patients/caregivers and health care professionals by providing their experienced-based intellect and ideas. These individuals have proven to be a great asset to the AHA/ASA and have contributed so much from the patient/caregiver perspective.
The focus of the Citizen Scientist Think Tank ™ is to empower our patients, caregivers, and stakeholders to become Citizen Scientists to help lead research efforts which may lead to better cardiovascular disease and stroke treatment in the future, making the Citizen Scientist Think Tank actionable, grassroots, and progressive.
The Citizen Scientist Think Tank ™ members offer a menu of services, from one-time interaction, to substantive research involvement from conception to implementation and dissemination. Projects which require a complex, multi-faceted view may employ the tri-layer Patient Engagement Pyramid protocol, whereby social media/grassroots/digital strategy guides the tone of a conversation, members are brought together in forums or focus groups to contribute to project design, and then member co-investigator(s) are installed on the research panel for the duration of the project.
Achievements
- Attend monthly conference calls with to help us understand and conceptualize the patient/caregiver perspective.
- Participate in focus groups on heart failure, hypertension, stroke, and low risk chest pain to assist our clinical volunteers in research.
- Act as co-investigators in the design of prospective research, allowing our Quality and Advocacy department to submit numerous federal grants.
- Facilitate patient reported outcomes (PROMs) for research studies
- Review and improve AHA/ASA consumer marketing materials, which lead to better content for other patients and caregivers.
- Represent the AHA/ASA in communications and advocacy efforts, including giving testimonials for use by our Media and Communications team.
- Co-authoring of peer reviewed journal articles
- Develop own research study related to patient safety
- One of our Citizen Scientists appeared on the Today Show to discuss stroke.
Recent Publications from the Citizen Scientist Think Tank
Incorporating Patient and Caregiver Experiences Into Cardiovascular Clinical Trial Design.(link opens in new window) - JAMA Cardiology
