258548 From "Research On" to "Research With" Cohort Members: A Case Study

Tuesday, October 30, 2012 : 10:30 AM - 10:45 AM

Sheena Cresswell, MPH , Child Health and Development Studies, Public Health Institute, Berkeley, CA
Marj Plumb, DrPH , Plumbline Consulting and Coaching Inc., Berkeley, CA
Barbara Cohn, PhD , Child Health and Development Studies, Public Health Insitute, Berkeley, CA
Piera Cirillo, MPH , Child Health and Development Studies, Public Health Institute, Berkeley, CA
The Child Health and Development Studies (CHDS), a project of the Public Health Institute, is a prospective cohort study, which began over 40 years ago to observe pregnancy, birth, and health outcomes across multiple generations. Over 15,000 families in the Kaiser Permanente Health Plan joined the CHDS between 1959 and 1967. Today, the original families and their children continue to participate in the CHDS, allowing scientists to discover how disease starts even before birth - not just by genes, but also through social, personal, and environmental surroundings. Cohort member's role had been solely as research subjects. In 2010 the CHDS received funding from NIEHS to form a Participant Advisory Council (PAC). Over 140 cohort members were invited to participate in the PAC. Twenty-one of the invited cohort members responded as interested, and 18 members currently serve on the council today. The purpose of the CHDS's PAC is to 1) provide guidance on research activities 2) identify research priorities from the perspective of the cohort and 3) promote cohort retention and more effective broad-scale ways to communicate with the cohort. The members all share the common fact that they either gave birth or were born into this cohort. The PAC is comprised of 7 first generation cohort members (moms) and 11 second generation cohort members (sons and daughters). Community-based Participatory Research promotes the equitable partnership between community and academically trained researchers. This Case Study will investigate the path from study subject to research partner among a small group of cohort members.

Learning Areas:
Public health or related research

Learning Objectives:
1)Define the complexities of forming a cohesive advisory counsel made up of people with the only common identity being their membership in a birth cohort. 2)Describe best practices of Advisory Counsel development and maintenance. 3)Identify ways in which capacity building can move individuals from cohort member to an advisory role to that of a partnership role. 4)List key components necessary to promote active participation and retention of an advisory counsel.

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: I am the project coordinator for a grant funded by the NIEHS. One of the aims of this grant is to recruit a participant advisory counsel. I work directly with this group and evaluate research in the field of CBPR along side research staff and our consultant, Marj Plumb of Plumbline Consulting.
Any relevant financial relationships? No

I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.