Advisors
Patient Advisory Group
The Patient Advisory Group (PAG) members help guide the conduct of the LIVEBETTER trial. This group includes several people with heart disease, all within the targeted age group and reflecting the diversity of the trial population. The group also includes someone who helps support their parents with heart disease, to help the study team understand the broader picture of what it means to family and friends of people with heart disease. The PAG advises the study team to ensure that the participant-centered experience is front and center for all that enroll in LIVEBETTER. The PAG are key members of the study team and their involvement has been critical in developing a trial that is culturally sensitive, inclusive, understandable, and relevant. Bringing their rich backgrounds to work hand-in-hand with study leadership, they enhance understanding of the participant journey, identify barriers to participating in LIVEBETTER, as well as provide insights on benefits, risks and burdens. The PAG members have been closely involved with development of all participant processes and educational materials, including the informed consent and recruitment documents to improve the LIVEBETTER trial experience for older adults. Click here to hear firsthand from our PAG members. The PAG is facilitated by members of Duke’s Clinical Research Institute (DCRI) Research Together™ program -- Renee Leverty, BSN, MA and Marcey Jiles, MS. The DCRI brings deep experience in gathering feedback from patient partners and ensuring the patient voice and experience is part of the entire research process. Click here for additional information about DCRI.
YCCI Cultural Ambassadors
The Yale Cultural Ambassadors program was developed by the Yale Center for Clinical Investigation (YCCI) to help link research teams to resources in the community. For the LIVEBETTER study, the Yale Cultural Ambassadors will help with the development of the recruitment plans, translate all study materials into Spanish, and help drive community engagement activities to promote the study and increase participation. Click here for additional information about the Cultural Ambassadors program.
Diversity Council
Working with the Cultural Ambassadors, the LIVEBETTER study team has formed a Diversity Council. The purpose of the Diversity Council is to make sure that the LIVEBETTER team is doing whatever it can to benefit minority populations, especially Hispanic and African American older adults. With the help of the Diversity Council, the study team is connecting with minority seniors in their communities and sharing materials in both English and Spanish to teach them about heart disease.
The Diversity Council currently has five members and is led by Dr. Norrisa Haynes, a Yale cardiologist with many years of experience working with diverse communities. (Click here for more information about Dr. Haynes.) Dr. Haynes is supported by YCCI Cultural Ambassadors Reverend Perry and Reverend Clayton, as well as Tom Ficklin and Harmony Jones, who are well-known and respected community leaders.
Through this partnership, Dr. Haynes and the Diversity Council hope to build more relationships within the community, encourage minority involvement, and make sure that the study findings ultimately help EVERYONE live better!
Community Advisory Board (CAB)
Another important source of feedback for the LIVEBETTER team is the Community Advisory Board (CAB). The CAB was formed by The Yale Program on Aging to support investigators who are conducting aging-related research studies. The Community Advisory Board consists of a diverse group (sex, race, and ethnicity) of 8-10 older persons. The CAB provides the LIVEBETTER study team another opportunity to hear what is most important to its patient stakeholders. The CAB meets regularly and is a valuable resource to obtain feedback from older adults from diverse backgrounds, providing the team with the chance to implement community-based recommendations that can improve the study and the experience of its participants. Click here for additional information about the CAB.