Local Community Involvement and Communication 

Appendix A
National Children’s Study Assembly Meeting
Breakout Session Summary: Local Community Involvement and Communication
December 17, 2003
Sheraton Atlanta Hotel
Atlanta, GA

Facilitators:
Amoke Alakoye, M.H.S., RTI International
Sheila A. Newton, Ph.D., NIEHS, NIH, DHHS

Opening Remarks

Ms. Alakoye began the session by introducing herself, describing her role at RTI International and with the National Children’s Study, and asking participants to introduce themselves and briefly describe their current work. Ms. Alakoye described the session as a very informal exchange of information and experiences as a "special ear" to the Interagency Coordinating Committee (ICC). She said that it is important for the Study to listen to the voices of communities and special interest groups.

Session Goals

Dr. Newton, who is a member of the ICC, noted that a goal of the breakout session is to provide an independent impression of the Study. She listed two questions for discussion:

• What are the best ways to address community issues given the strong core protocol?
• What are the types of community issues?

Community Issues

During a discussion, participants identified the following broad areas of community issues:

• Trust
• Confidentiality
• Retention
• Participant interest
• Participant motivation.

Participants noted that important activities for establishing community advisory bodies include:

• Get local guidance to help identify members
• Ask municipal/school groups
• Find out about community organizations with related interests
• Ask local members of provider organizations
• Think "categories"
• Consider school nurses and faith-based nurses/health organizations.

Group Discussion

Nancy Betts, Ph.D., R.D., University of Nebraska, noted that to successfully engage local communities, it is necessary to "get out into" the communities, to ask people questions, and to essentially call town meetings. She suggested that the community should have a voice in developing the Study protocol. Dr. Betts described some of her experience with both community advisory committees and research advisory committees. A community liaison is an important element in coordinating activities and communication. Communities should be asked what works for them. Other important elements of communication include:

• Web sites
• E-mails
• Quarterly meetings of the community advisory committee
• Series of seminars/conferences
• Other groups’ networks
• Focus groups for up-front input
• Input from recruiters/go where the people are
• Newsletters
• Citywide maternal and child health programs.

Dr. Betts said that two projects that she was involved with (fetal infant mortality review and statewide asthma coalition networks) had boilerplate text and display boards at the ready for conferences. In such projects, it is important to keep communication flowing between scientists and communities. The planning and development for these projects took about one year and involved foundation representatives, state health departments, education departments, and community institutions from the grass roots up. Dr. Betts remarked that people are generally very enthusiastic about participating in studies if there is a core group that is very involved from the beginning. The more specific the roles and responsibilities for the core group, the more interested and involved people will become.

Dr. Betts described an ongoing multi-state project that uses cooperative extension services and county extension agents across 11 states. This team is developing a very structured protocol that focuses on dietary intake of low-income 18- to 24-year-olds. In addition, two of the states developed strategic partnerships in other ways, without the extension component, to provide structured quota sampling. The study performs an initial baseline assessment, provides 4 months of intervention, and then reassesses the dietary changes. Intervention and reassessment continue at 4-month intervals. The project has a tracking system, and the researchers in each state developed the protocol based on a theoretical model. Communities were involved with protocol development through focus groups, tailored newsletters for intervention, and individual interviews with the target group. The most important aspect in determining the number of training sites was the specific input from the recruiters, who knew how to deal with the target group and who knew the people in the community. Given that the target group is mobile, fluid, and flexible, the project provided a monetary incentive to complete the assessments.

Marian Melton, City of Decatur, Georgia, Children and Youth Services, questioned whether the topics discussed were relevant issues for the Study. According to Ms. Melton, important issues are dependent on the particular population, particularly lower income components; the specific challenges of retention; and the ability to track moving, mobile participants. She commented that some participants may have telephones but no fixed address, whereas others may have addresses but no telephone. Tracking working telephones and addresses is always challenging. Ms. Melton noted the following:

• Different things work for different people in different parts of the country.
• Preferred means of communication are different for different age groups.
• Incentives could include things such as prepaid phone cards and cell phones.
• The protocol needs to be flexible to tailor to mothers versus teenagers, fathers versus preteens.
• There are different issues of informed consent with different groups (for example, Native Americans).
• There are cultural issues of incentives for participants to remain in the study (for example, the role of tribal elders of Native Americans).
• There needs to be more support for site-specific flexibility in recruitment and retention.
• Communities need to have study information communicated back to them.
• Study interest and motivation can be maintained through the following mechanisms:
• Developing a sense of pride in Study participation
• Developing community support through school and church programs
• Providing state-of-the-art information feedback to communities
• Fostering an identity through newsletters and annual gatherings
• Making the study relevant to individual community concerns
• Addressing issues of access to health care
• Making it fun.

Ruth M. Quinn, Johns Hopkins University, Bloomberg School of Public Health, related her experience in developing local community involvement and communication for a study of mothers and infants. The approach was to initially establish a leadership council, with individuals in upper management roles who would support the study. This council identified others who represented specific communities. Community representatives were asked to identify those who could provide different community viewpoints. The constant question to all was: Who else should we talk with? This strategy provided a continuously expanding community network, which began with institutions and led down to the grass-roots level.

Another approach for developing local community involvement and communication is to focus geographically on a site and identify organizations that are already operating in that area. Local health care providers and advocacy groups provide access to communities and often have networks and established lines of communication. Provider organizations can specify categories of groups and can help to determine the gaps in community involvement, which can eventually be filled. Aggressive outreach is an essential component of this approach.

In concluding the discussion, Grazell Howard, J.D., National Coalition of 100 Black Women, Inc., The Libra Group, asked, "Where is the community now?" She remarked that now is the time to involve communities and civic organizations with the Study. Ms. Howard expressed the need to find a delicate balance between researchers and communities, whose parallel activities need to begin very soon if the Study is to succeed.

In Attendance:

Amoke Alakoye, M.H.S., RTI International
Nancy M. Betts, Ph.D., R.D., University of Nebraska
Leni Buff, National Children’s Study Program Office, NICHD, NIH, DHHS
Grazell Howard, J.D., National Coalition of 100 Black Women, Inc., The Libra Group
Marian Melton, B.A., Children and Youth Services, City of Decatur, GA
Sheila A. Newton, Ph.D., NIEHS, NIH, DHHS
Ruth M. Quinn, Bloomberg School of Public Health, Johns Hopkins University
Andrea C. Villanti, M.P.H., CDC, DHHS