Alabama Genomic Health Initiative Annual Report Annual Report-AGHI FINAL | Page 16

Participant
& Provider
Engagement
Working Group
Leaders
Mona Fouad, MD
UAB Senior Associate
Dean for Diversity &
Inclusion
Recruitment
The Alabama Genomic Health Initiative Participant and Provider Engagement working
group was charged with recruiting participants who represent the demographics of
the state of Alabama. Furthermore, this working group was charged with engaging key
stakeholders to evaluate recruitment, education, and communication strategies associated
with the AGHI.
The first participants were enrolled in the genotyping population cohort of the AGHI on May
18, 2017, at The Kirklin Clinic of UAB Hospital. A two-week pilot recruitment phase was
completed to evaluate recruitment and enrollment processes for the first 100 participants.
After a brief pause in enrollment to evaluate and improve workflow and to activate the study
database in OnCore, recruitment for the AGHI resumed on June 22, 2017, at both The Kirklin
Clinic of UAB Hospital and at a second enrollment site in the Medical Towers on the UAB
campus.
Next steps:
Recruitment efforts in the first year have also included developing plans to bring the AGHI
to Selma, Huntsville, Montgomery, and Tuscaloosa, Ala. Initial meetings and site visits are
in progress at these locations, with field study launches anticipated before the end of the
calendar year. Sustainable models of recruitment at these sites will include identifying site
coordinators, community engagement managers, data managers, study navigators, and
certified lab technicians to develop tailored recruitment plans unique to each location.
In the final phase of AGHI recruitment, enrollment efforts will extend to additional areas of
the state to ensure that all Alabama residents have an opportunity to enroll in the AGHI.
William Curry, MD
UAB Associate Dean
for Rural Health &
Primary Care
AGHI Recruitment By the Numbers (as of September 29, 2017)
73% 27%
FEMALE
Sara Knight, PhD
Professor in
Preventive Medicine
Community Engagement
Efforts to engage Alabama community members and state leaders began with a town hall meeting at the UAB
Minority Health Research Center’s Health Disparities Research Symposium in Birmingham on May 3, 2017. Other
town hall meetings are planned that will use facilitated deliberative process methods to obtain diverse Alabama citizen
perspectives on genotyping and return of results to consenting participants. These groups are designed to provide
a voice for Alabama community members and state health care, services, and business leaders to inform the AGHI
efforts and return of results.
Other opportunities for stakeholder engagement included a presentation by Bill Curry, MD, to the CanSURVIVE
Conference, held at the American Cancer Society, where he discussed the goals and processes of the AGHI project.
The project was also presented on July 25, 2017, at the Cancer Center Community Dissemination Institute.
To engage key health care, service organization, and business leaders, Sara Knight, PhD, convened and led the first
quarterly AGHI Stakeholder Advisory Committee meeting on July 11, 2017, on the UAB campus. Members of this
committee include clinicians, UAB Health System executives, and community leaders from across the state who help
inform various efforts associated with the AGHI. In this initial meeting, the committee discussed current recruitment
efforts for the project and provided recommendations to improve its visibility and connectivity to their communities of
interest.
WORKING GROUPS: PARTICIPANT &
PROVIDER ENGAGEMENT
Next steps:
• Key informant interviews of health system leaders and AGHI participants
• Host a series of town hall meetings with Alabama community members
• Recognizing that first-year enrollment did not accurately reflect the population of African American residents in the
state of Alabama, efforts to improve communication about genomic medicine with African American community
leaders and health care providers will be prioritized in year two. Our goal in doing so is to achieve equitable
representation of our diverse state population by the end of year two.
• Provide AGHI leadership with the rich and diverse perspectives of Alabama community members and state leaders,
revising methods and procedures as needed based on feedback from these various voices across the state.

MALE
AGHI ENROLLMENT BY RACE
n American Indian or Alaska Native . . . . . . . . . . 0.8%
n Asian . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.0%
n Black/African American. . . . . . . . . . . . . . . . . . 13.1%
n Native Hawaiian or Other Pacific Native . . . . . 0.1%
n More than one race. . . . . . . . . . . . . . . . . . . . . . . 1.3%
n Unknown. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.3%
n White. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 78.4%
* 5.6% OF PARTICIPANTS ARE HISPANIC/LATINO
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Alabama Genomic Health Initiative Annual Report
www.aghi.org
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