Online Program

Engaging community health care providers in genomic research

Sunday, November 3, 2013

Elisabeth Klein, DNP, MSN, CNS, Inova Translational Medicine Institute, Inova Health System, Falls Church, VA
Alma Fuller, MS, BS, CCRC, Inova Translational Medicine Institute, Inova Health System, Falls Church, VA
Our community hospital and academic center delivers over 10,000 newborns annually, creating many avenues for research. Our Translational Medicine Institute has enrolled over 1200 family trios from over 70 countries in two whole genome research studies. One study is exploring possible correlations to preterm birth and the other is a longitudinal study exploring childhood health outcomes. Diversity of enrollment is critical to the quality of genomic research. We have made specific efforts to recruit subjects of diverse race, ethnicity and socioeconomic status. We have a multicultural staff of clinical research coordinators and associates to recruit subjects. We provide enrollment materials in English and Spanish as well as at average and low reading levels. Much effort has been placed in creating partnerships with hospital and community health care providers to be able to approach their patients for our studies. Recruitment for the preterm birth study required our team to join forces with multicultural health care providers from neonatology, obstetrics, perinatology and a richly diverse nursing staff. Enrollment for the longitudinal study occurs during the pregnancy which requires our staff to approach patients in the prenatal care setting. We are currently recruiting from several large obstetric practices, including a safety-net community clinic. This presentation/poster will describe the process of working in partnership with the hospital, physicians and their staff. We will share the challenges in placing the right clinical research staff in the office or unit, staff preparation and education, and the tools necessary to support our study.

Learning Areas:

Clinical medicine applied in public health
Diversity and culture
Public health or related research

Learning Objectives:
Discuss the importance of diversity in genomic research Describe two challenges in engaging community health care providers in genomic research List three strategies to promote partnerships with community health care providers in genomic research

Keyword(s): Genetics, Community Research

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: I am a project manager for both of the research studies discussed in the presentation or poster. I have over 35 years experience in the clinical care of mothers, newborns and families who are the focus of our studies. I am interested in the informed consent issues with genomic research and ensuring that participants and their care providers understand the research.
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.