Community Engagement Workshop 

December 3, 2002
National Institutes of Health
Bethesda, MD

This meeting was held in conjunction with the National Children’s Study, which is led by a consortium of federal agency partners: the U.S. Department of Health and Human Services (including the National Institute of Child Health and Human Development [NICHD] and the National Institute of Environmental Health Sciences [NIEHS], two parts of the National Institutes of Health, and the Centers for Disease Control and Prevention [CDC]) and the U.S. Environmental Protection Agency (EPA).

Introduction

Sarah Keim, M.A., Study Coordinator for the National Children’s Study (Study), NICHD, NIH, DHHS, explained that the Study would explore a broad range of environmental factors that could influence the health and well-being of children. For the Study, environment is broadly defined to include chemical, physical, social, and behavioral influences. The study will examine approximately 100,000 children across the United States and follow them through prenatal development, birth, childhood, and into adulthood.

Ms. Keim noted that the design of the Study had been a collaborative process involving scientists, researchers, and advocates; however, it had not yet begun engaging the specific communities and the localities where sites will actually be located. She added that the challenge was to devise strategies to engage communities from this point forward.

Purpose of the Workshop

Diane Dennis-Flagler, M.P.H, Agency for Toxic Substances and Disease Registry, CDC, DHHS, explained that the Community Outreach and Communication Working Group was formed in July 2001. To ensure community participation over the life of the Study, this Working Group will:

• Develop strategies for engaging the community, tools for communication between the scientists and participants, and methodology for reporting findings to communities
• Develop strategies that allow for community input and true participation in the Study process, as much as possible
• Draft a guidance document for the Study.

Roles and Expectations: Engaging Communities in Research

Panelists for this portion of the workshop were Maria Amaya, Ph.D., R.N.C., University of Texas, El Paso; Cleopatra Howard Caldwell, Ph.D., University of Michigan School of Public Health; Rebecca Jim, Demanded Agency, Inc.; Loretta Jones, Healthy African American Families; Virginia Rauh, Sc.D., Columbia University; and Nancy Rothman, Ed.D., R.N., Temple University. Panelists and meeting participants responded to several questions on the role of communities in research.

Question 1: What is the community’s role in participatory research, and what are some ways that communities can have input into the Study design process?

All panelists responding to this question agreed that engaging the community was crucial and that it was never too early to start the process. Panelists discussed the value of trust and honesty and agreed on the importance of respecting a community’s ability to define its own needs.

Some suggestions made by the panel were:

• Create community profiles that include mutually beneficial site-specific questions. These should be jointly developed by Study planners and communities.
• Respect community knowledge about community needs and solicit input on Study design. Include communities in site selection and be sure to listen to their ideas.
• Know who speaks for the community and make sure that the community is an equal partner.
• Clearly define all terminology used, including terms such as research and engagement.
• Empower communities by explaining the advantages of Study participation for both the individual participant and the community as a whole.
• Ground the researchers in reality by identifying barriers, explaining cultural norms/practices, and helping researchers overcome their own biases.
• Have an upfront, frank understanding that scientists do not understand community and communities do not understand science.
• Learn from each other to develop trust.
• Be wary of the myth of the minority scientist. Minority scientists cannot gain community buy-in by virtue of their race/ethnicity/nationality.
• Have value, have vision, and the Study will have victory.

Suggestions from other workshop participants were:

• Be careful using language and be cognizant of the historic use of terms, for example, participant and subject.
• Be honest about the amount of community engagement the Study planners desire. There is a broad continuum between the desire to engage the community for recruitment’s sake and the desire to engage the community fully by having community members involved in every step of the process from study design to data analysis.
• Avoid use of language that marginalizes or makes communities “other,” for example, we, us, ours versus you, they, your.
• Understand that communities are not monolithic structures; even within single cultures there exists a great deal of within-group variability. Though the Study wants to engage communities, data will still be collected from individuals, and community needs do not necessarily reflect individuals’ needs.
• Discuss the benefits of participation. Although scientists and researchers may easily see the value of this Study, communities would need to be extremely altruistic to share that vision. Site-specific questions may be the only solid selling point for this Study to communities.

Question 2: How can Study planners ensure that communities clearly understand the limitations of the Study?

A common theme in the responses to this question was the importance of being honest about what the Study is and what amount of involvement is desired from the community. Participants discussed whose values and visions would be reflected in the Study––the researchers, the community, or both.

Some suggestions from the panel were:

• Advocate for true partnerships. Ask community members what sort of information they need, what type of language they prefer, and what level of involvement they want.
• Do not assume that communities are helpless, regardless of their level of resources.
• Know the stakeholders and the formal (and informal) leaders who can provide access to the community and its norms and behaviors.
• Avoid token measures of involvement, such as hiring only one community member to work on the Study in the position with the least amount of responsibility.
• Understand the dynamics (power, financial) between the researchers and the community organizations.
• Share leadership responsibilities so that the community can share in ownership of the project.

Question 3: What types of strategies or methods have been used to identify characteristics of the community that are potential Study sites? What criteria would you use to evaluate whether potential Study locations can ensure community partnership in a research agenda?

In order to identify unique dynamics and characteristics in a community, it is crucial to engage in community partnerships. By developing relationships with community-based organizations, local academic institutions, and community members, researchers will begin to understand the different groups and subgroups that make up the community. Site visits might be an excellent way to investigate whether communities have already established partnerships with academic institutions.

Some suggestions made by the panel were:

• Partner with different groups within a community to help develop a community profile that will provide data about housing, services, and other community resources.
• Build on partnerships that have already been established.
• Provide information to the community about the type of research the Study intends to do.
• Provide information about ethical research versus unethical research and the risks and benefits of informed consent.
• Partner with community-based organizations (CBOs) and provide training so the organizations can assist the researchers. Engage the CBOs in the planning process for the research.
• Create a scientific advisory board and a community advisory board that will work in tandem to collect, review, and corroborate research practices and findings.

Discussion points brought up by other workshop participants were:

• Share preliminary findings.
• Allow communities to assist with data interpretation.
• Periodically review the informed consent process to ensure that there is continued and ongoing consent.
• Risk communications is crucial. If the Study finds something harmful, it is obligated to share that information with the greater community.
• Teaching, training, and information all give back to the community. Community partners must be prepared to disseminate findings to their constituents.
• Understand and be open about research as a political activity.
• Flexibility is crucial. There may be geographic, population, and/or political changes within communities over the life of the Study.

Communication, Intervention, and Sustainability

Panelists for this portion of the workshop were Thomas Arcury, Ph.D., Wake Forest University School of Medicine; Barbara Brenner, Mount Sinai Medical Center, Michelle Kegler, Ph.D., M.P.H., Emory University; and Kathleen M. MacQueen, Ph.D., M.P.H., Family Health International.

Question 1: How can the Study emphasize healthy development and outcomes, instead of disease, and promote that aspect within communities?

This question was interpreted by the panel as, “How should we frame the study?” The general consensus was that the Study must emphasize good health while not ignoring issues that may be less appealing (for example, disease). Attention must be paid to the language used to describe the Study, and care must be taken to make sure that all materials distributed reflect cultural sensitivity.

Some suggestions made by the panel were:

• Find out what health outcomes communities are interested in. Healthy development and disease are actually two sides of the same coin; their relationship to each other must be explored in communities.
• Monitor, measure, and report on disease and healthy outcomes.
• Educate communities about the value of collecting disease information and how negative information can actually bring about change.
• Establish community-to-community mentoring. If one center is flourishing, it may be able to help a center that is struggling with community partnerships or communication.
• Know the community the Study is working with so that planners can tailor positive and relevant messages to them and their specific health concerns/needs.
• Emphasize the positive in slogans, written materials, and health fairs.

Question 2: Given that the role of interventions has not yet been established, what issues should communities and Study planners consider?

Most responses to this question were focused on the ethical and legal implications of interventions (or the lack thereof). Participants discussed whether the Study itself would act as an intervention, and they stressed that discussing interventions with communities is critical. In addition, participants noted that interventions should be flexible in order to accommodate the length of the Study and the needs of each particular community. Finally, communities should be involved in designing interventions and writing grants to fund programs.

Some suggestions made by the panel were:

• Hire a staff person at each center who is dedicated exclusively to designing and implementing interventions.
• Establish technical assistance centers to help communities translate research findings into usable interventions.
• Make preliminary results immediately available to communities, not just scientists.
• If workable interventions are readily available, they should be offered to everyone.
• Create a fund to help communities design or implement interventions that address issues uncovered by the Study.
• Acknowledge that many interventions are in a “gray area,” for example, identifying children who don’t wear seat belts. Promising interventions will be monumentally costly.

Discussion points brought up by other workshop participants were:

• Develop a resource manual, designed in partnership with the local community, that identifies what is available in that particular neighborhood, city, or state.
• Investigate ways to partner with foundations to help fund certain interventions.
• Provide communities with strategies to tackle health issues that are uncovered by the Study. It will be extremely important that individual centers be receptive to community concerns if they wish to maintain the good faith of the community.

Question 3: What procedures/processes might help to maintain long-term participation in the Study?

The discussion of retention involved two separate levels: retention of communities in the Study as well as retention of the individual participants. Both are of equal importance, and both require separate strategies for engagement and different incentives to stay. Panelists asked if there would be an effort to track those participants who move during the Study, and if so, how would this be done. There is an opportunity to bring people together across communities and across sites to create a third level of community: the community of the Study.

Some suggestions made by the panel were:

• There must be tangible incentives at the individual level: money, free health care, or access to health information (for example, a toll-free number).
• Capitalize on the community created by the Study. The Study could expand on this community by organizing periodic health fairs, newsletters, or media campaigns.
• Track the reasons why participants leave the Study and try to create incentives to retain similar participants.
• Hire local community members to work in the center in a variety of positions. One staff person could focus on maintaining community engagement and enthusiasm for the Study as well as planning outreach activities.
• Continue outreach activities in an appropriate, targeted manner for the life of the Study in each community where a site is located. Just because the Study is doing good science doesn’t mean it is benefiting communities.
• Connect with different networks such as the HIV prevention trials and cancer networks to provide useful models for ways to create a national impetus and identity.

Discussion points brought up by other workshop participants:

• Good ethics will define the success of the Study and the ability to retain participants and whole communities. Communication and honesty will be vital.
• Recognize that communities will change over the life of the Study, and be prepared to adapt to these changes.
• Monitor the community for new leaders and/or new partners. Community-based organizations rise and fall, and the centers must remain flexible to the community’s resources and needs.
• Remember that even though children are the primary participants in the Study, they are not autonomous units. The Study also needs to engage mothers, fathers, brothers, and sisters.

Concluding Remarks

Information from the workshop will be incorporated into a Study guidance document to help develop methods and tools for community engagement. Issues and concerns raised by the Working Group and others during the December general assembly included:

• A need to provide a clearer definition of “community” and what that means to this Study.
• There appears to be no process to include community participation in the Study design process.
• Along with the uncertainty of how to include all segments of the community in the study design planning, there is also uncertainty about who should be responsible for this process.
• There are unrealistic expectations and/or assumptions about the burden on study participants of invasive and repetitive sample collections.
• There are ethical concerns about interventions after discovery of negative health, family, or behavioral outcomes during the course of the Study. This issue needs to be clearly addressed and relayed to study participants early.

Over the next 6 months, the Study’s top priority will be to finalize and disseminate the guidance document. It will be sent to the Study Assembly for comments and to the National Children’s Study Advisory Committee for approval.

The Community Outreach and Communication Working Group has invited each of the workshop panelists to join the Working Group as at-large members so that Study planning might continue to benefit from their knowledge and expertise. Their help will improve the chance for advances in scientific knowledge and a successful and relevantlongitudinal Study for the communities involved.

Participants

Amoke Alakoye, M.H.S., Epidemiology and Medical Studies Program, RTI International
Maria Amaya, Ph.D., R.N.C., University of Texas, El Paso
Thomas A. Arcury, Ph.D., Wake Forest University School of Medicine
Frank R. Avenilla, NICHD, NIH, DHHS
Barbara Brenner, Mount Sinai Medical Center
Cleopatra Howard Caldwell, Ph.D., University of Michigan School of Public Health
Diane Dennis-Flagler, M.P.H., Agency for Toxic Substances and Disease Registry, CDC, DHHS
Anne L. Fletcher, M.P.A., M.S.W., NICHD, NIH, DHHS
Peter J. Gergen, M.D., M.P.H., Center for Primary Care and Research, Agency For Healthcare Research and Quality, DHHS
Kate-Louise Gottfried, J.D., M.S.P.H., Office of the Secretary, DHHS
Candice K. Jalonen, M.P.H., NICHD, NIH, DHHS
George S. Jesien, Ph.D., Association of University Centers on Disabilities
Rebecca Jim, Demanded Agency, Inc.
Loretta Jones, Healthy African American Families
Michelle Kegler, Ph.D., M.P.H., School of Public Health, Emory University
Sarah A. Keim, M.A., NICHD, NIH, DHHS
Lawrence P. King, B.S.M.T., DEBLAR & Associates
Benny J. Kottiri, Ph.D., National Center for Health Statistics, CDC, DHHS
Tamar Lasky, Ph.D., NICHD, NIH, DHHS
Charles Lee, Office of Environmental Justice, EPA
Kathleen M. MacQueen, Ph.D., M.P.H., Family Health International
Edith Ann Parker, Dr.P.H., University of Michigan School of Public Health
Virginia Rauh, Sc.D., Columbia University
Nancy Rothman, Ed.D., R.N., Temple University
Susan L. Schantz, Ph.D., University of Illinois, Urbana-Champaign
Brounetta Walton, B.S., Agency for Toxic Substances and Disease Registry, CDC, DHHS
Paula M. Wilborne-Davis, M.P.H., C.H.E.S., Association of Occupational and Environmental Health Clinics