Appendix C
National Children’s Study Assembly Meeting
Breakout Session Summary: Considering Health Disparities and
Engaging "High-Risk" Groups
December 17, 2004
Sheraton Atlanta Hotel
Atlanta, GA
Facilitators:
Sarah Keim, M.A., NICHD, NIH, DHHS
Adelaide Barnes, IRTA Fellow, NICHD, NIH, DHHS
Ms. Keim opened the meeting by welcoming the attendees and asking for individual introductions. The discussion began with comments from several participants on the lack of communication about the meeting to the public. Several attendees stated that they had received no notification about the Study or the meeting. Most attendees from the community had learned about the meeting on the Internet. Participants suggested that in order to successfully attract community members, organizers must search in every city for community organizations and inform local public health organizations.
Ms. Keim asked the group to think about what factors would influence mothers to participate in the Study and how to reach individuals and communities. The discussion focused on:
- Sampling burden for Study participants
- Need to emphasize attention on African American, Native American, Hispanic, and Asian/Pacific communities in Study
- Desire to include children with special needs
- Recruitment and retention of minority and high-risk groups (for example, children in foster care, substance abusers)
- Benefits and incentives for participants
- Difficulty of communicating information about the Study to high-risk groups.
An attendee asked the facilitators to explain the goal of the breakout session. Ms. Keim said that it was to obtain feedback from representatives of different communities and researchers on health disparities and inclusion of high-risk groups in the Study. The National Children’s Study Advisory Committee (NCSAC), National Children’s Study Program Office, and Interagency Coordinating Committee (ICC) wished to obtain ideas, feedback, and recommendations from diverse groups of people.
The facilitators were questioned about input from the community in Study planning. The facilitators described the focus groups held to date and the results from those efforts. They were then asked about how representative the Study sample would be and the requirements for institutional sites. Concern was expressed that institutions that serve high-risk populations but don’t have extensive infrastructure might not be eligible to serve as Study sites. Questions were raised about how much time institutions would have to prepare a proposal to participate. Ms. Keim explained that the Community Outreach and Communications Working Group was creating criteria for institutions. One requirement would be an existing relationship with the local communities. Attendees suggested that a community advisory board be created, consisting of local government leaders and other community members. The board would facilitate community outreach and might be beneficial for Study planning.
Attendees said that the following questions would need to be answered soon:
- What do individuals and communities get for participating in the Study (expectations, concerns, partnerships)?
- How often do they get it?
- What will be done to retain Study participants’ interest and commitment?
Attendees said that once answers to these questions are determined, a thorough and effective outreach program should be implemented to ensure that communities are partners in Study planning.
The discussion then covered the ethical and legal hurdles involving special populations such as children in foster care, homeless people, migrant workers, or participants who do not speak English. In order for the Study to include these populations, early involvement of these communities is essential, and strategies to involve these communities must be investigated. In addition, reaching and retaining participants from these groups needs to be built into the Study design. Issues to consider are:
- Population mobility and dispersion
- Cost of enrollment
- Cost of retention.
Camara Jones, M.D., M.P.H, Ph.D., suggested that the National Children’s Study be considered a study of localities. Environmental exposures are not randomly distributed; they are concentrated in specific localities. She further stated that to address health disparities in this context, the Study must consider how individuals and communities function. Rather than studying both as separate entities, the Study should focus on both as it progresses. The participants then discussed this concept at length. Attendees emphasized that environmental justice concerns the place in which a person lives and his or her access to education, criminal justice, health care, and other services. Exposures are not isolated, but cumulative. They stressed that exposures are not just chemical; they also include poverty, injustice, and other social stressors. Participants discussed how to measure community and individual exposures and protective factors. A caveat was added that care must be taken when selecting communities to study to avoid pre-selecting for problems. The emphasis for the Study should be on the birth cohort rather than an environmental exposure cohort. Nick Sims-Jones, M.D., suggested that one method of study design that can address this issue is to have random selection and then oversample specific high-risk communities.
Jesse N. Marquez, Coalition for a Safe Environment, stated that he thought enrollment in the Study would not be an issue. He already has identified eight couples in his community who want to participate.
Attendees discussed the challenges and need for inclusion of high-risk groups in the Study. Some of the groups that might pose special challenges are inmates, the disabled, immigrants, the illiterate, and children in foster care. Including these populations in the Study is essential, but might increase the budget. They discussed how to build this into the budget and different methods for approaching these groups for participation.
In sum, the participants offered the following suggestions to community organizers:
- Implement a purposive sampling strategy that emphasizes oversampling particular communities, language populations, and high-risk groups.
- Focus on the community. There should be a commitment to community involvement throughout the entire process.
- Results should be shared back with the community in a timely manner, so that policies may be created or altered in order to address the discovered needs.
- The Study should focus on the individuals as part of a community, and there must be a commitment to understand health disparities.
- The Study must include elements of the physical and social environment.
- Specific issues (such as the inclusion of high risk communities) should be considered early in order to factor these considerations into the budget.
- There must be a commitment to act.
Additional questions and concerns raised by attendees were:
- What methods have been included in the Study design to allow a health disparities focus?
- How could participation in the Study be attractive enough to overcome the burden to participants? What incentives would be used?
- What is the role of the hypotheses from the Social Environment Working Group?
- The sampling workshop in March should have representation of health disparities and social issues.
- The morning’s sessions with the director of the Centers for Disease Control and Prevention and the Surgeon General did not mention health disparities. What is the commitment of the Study to health disparities?
- How will the Study planners involve communities or groups that represent children around the country?
- The poster sessions did not focus specifically on social justice or health disparities.
- Will the Study only address the early years of life?
- During the Study, if a problem (individual or community) is identified, will any intervention be done?
- How will study findings be shared with participants and the public?
- At what point(s) in the Study will findings be shared?
- What will be done with the findings? Regulatory changes? Enforcement changes? Policy changes?
Summary
The facilitators asked attendees to summarize the most important issues identified in the session. These included:
- How is recruitment and retention of high-risk populations incorporated in Study design?
- How will health disparities and environmental justice be integrated into Study design?
- What individual and community interventions will occur during and after the Study?
- How and when will results of the Study be communicated to the public?
- Will communities be studied as well as individuals?
- What are the possible impacts of the results of the Study on individuals, families, communities, stakeholders, and national policies?
Participants requested that notes from the breakout session be e-mailed to each person in attendance.
In Attendance:
Broderick Adams, Morehouse School of Medicine Jennifer Benz, B.A., National Opinion Research Center
Yvonne E. Bryan, Ph.D., R.N., National Institute of Nursing Research, NIH, DHHS
Arlene Butz, Sc.D., R.N., C.P.N.P., National Association of Pediatric Nurse Practitioners
Michelle Chiezah, M.P.H., Hennepin County Community Health Department, MN
Leslie L. Davidson, M.D., M.Sc., Columbia University
David Easa, M.D., Clinical Research Center, University of Hawaii
Barbara Farrell, M.S., R.N., Baystate Medical Center, Springfield, MA
Rachel Grindstaff, Office of Research and Development, EPA
Christine D. Johnson, Ph.D., M.P.H., Henry Ford Health System, Detroit, MI
Camara P. Jones, M.D., M.P.H., Ph.D., National Center for Chronic Disease Prevention and Health Promotion, CDC, DHHS
Rolf Loeber, Ph.D., Western Psychiatric Institute and Clinic, University of Pittsburgh
Jesse N. Marquez, Coalition for a Safe Environment, Wilmington, CA
Amani Nuru-Jeter, Ph.D., M.P.H., University of California, San Francisco
Kike Ojo, City of Atlanta Department of Watershed Management
M. Nicole Shumpert, M.P.H., National Center on Birth Defects and Developmental Disabilities, CDC, DHHS
Nicki Sims-Jones, R.N., M.Sc.N., Children’s Environmental Health, Health Canada
Jennifer S. Singh, M.P.H., Office of Genomics and Disease Prevention, CDC, DHHS
Kristine O. Suozzi, Ph.D., Bernalillo County Environmental Health Department, Albuquerque, NM
Scyatta Wallace, Ph.D., Department of Epidemiology, CDC, DHHS
Susan Wang, M.D., M.P.H., National Center for HIV, STD, and TB Prevention, CDC, DHHS
Paula M. Wilborne-Davis, M.P.H., C.H.E.S., Association of Occupational and Environmental Health Clinics, Washington, DC