Cer report brief

Report brief

San Francisco State University Center for Research on Gender and Sexuality César E. Chávez Institute Health Equity Institute

COMMUNITY-ENGAGED HEALTH RESEARCH Experiences from the San Francisco Bay Area

Community-based organizations (CBOs) face serious barriers in gaining access to and applying scientific information about the populations they serve and the effectiveness of their work. Rarely do CBOs, let alone community residents, have (1) access to the complex language of science and research and (2) a good understanding of what science and research mean for their work and the health of their community. Since the mid-twentieth century, health researchers and scientists have advocated community-based, participatory, collaborative, and action research as strategies to employ scientific principles and practices in pursuit of a more equitable society. Community-engaged research (CER) has a range of desirable consequences for the research process, including improving participation rates, strengthening research external validity, increasing the likelihood for follow-up, and building capacity within individuals and communities most affected by health disparities. CER also brings together rigorous public health research and practice to address social and environmental injustice and differences in health.

Background The Health Equity Institute (HEI) at San Francisco State University (SF State) in collaboration with SF State’s Cesar Chavez Institute and Center for Research on Gender and Sexuality proposed a shortterm project that allowed them to explore the current definitions and practices in the engagement of community voices and expertise in the health research field.

The team conducted 15 interviews and 2 focus groups a total of 22 key informants, including researchers, funders, community members, and Institutional Review Board (IRB) members at Bay Area universities, foundations, community-based organizations, and government agencies. We also implement a brief (10-item) web-based survey among a convenience sample of researchers in the San Francisco Bay Area. An A total of 42 investigators accessed the survey, and 34 surveys were completed. The purpose of the interviews and focus groups was to:  Identify the range of activities used to engage community in research projects;  Increase understandings of the reasons for CER, barriers to CER, and when CER is most

beneficial;  Clarify distinctions between community engagement, community action research, community-

based participatory research, and other related terms; and  Classify best practices for CE among local researchers, funders, and community representatives.

Report brief: Community-Engaged Health Research — Experiences from the San Francisco Bay Area

Below we discuss the importance of CER and current practices, barriers, and best practices in fostering and sustaining community engagement.

What is Community-Engaged Research (CER)?

Community engagement in research has been found to strengthen research validity in health-oriented research as well as build capacity within individuals and communities most affected by health disparities. Community partners may seek academic researchers who are respectful and attentive to the concerns and needs of the community partner. In CER, scientists and community representatives work together to (1) gain insight into poor health outcomes and inequalities in obtaining treatment and care; (2) develop, implement, and evaluate interventions while being aware of cultural variations; and (3) learn from one another in a sharing of ideas and resources. It involves meaningful collaboration between researchers and community leaders to help end health disparities in communities.

Why is CER Important?

CER promotes collaborative partnerships that allow new theories to emerge, which increases the likelihood that these science-based interventions will be accessible and appropriate to community needs. CER can also transform the relationship between researchers and community members. For instance, academic researchers work with people who might otherwise be only “research subjects” while these people act as ‘co-researchers’ and participate in research design, implementation, and dissemination to take action that will promote meaningful social change in their lives.

Types of CER One of the most prominent forms of CER is community-based participatory research (CBPR), which has been long recognized as a critical approach to addressing health issues that stem from an unequal distribution of resources such as health care, funds, or education. Other terms include communityengaged scholarship and participatory action research. Community partners appear to find the term ‘engaged’ especially appealing as a response to the historically exploitative relationships between academic researchers and community members.

Barriers A lot of mistrust of researchers remains at the community level. Community members suspect that researchers are more interested in professional advancement than in building, sustaining, or supporting relationships with the community. Community members suspect that researchers are “using” the communities by collecting data with no return of information and no shared credit. The communities researchers study are often marginalized or disenfranchised segments of the population, and there may be a history of poor relations between the community and researchers and cultural and language barriers that may prevent meaningful collaboration and partnerships.

Other barriers exist in the academic arena. Academic researchers often do not value CER as much as they do other methodologies. Another barrier is the time required to develop and maintain collaborative relationships with community partners. For new researchers, CE projects are expensive, and few resources are available for funding. Thus, most CER is done by senior researchers with

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Report brief: Community-Engaged Health Research — Experiences from the San Francisco Bay Area

greater funding opportunities. This can prevent untenured academic researchers from securing the publications needed to get tenure, thus limiting advances in CER. The following respondent explains the constraints: What makes community work hard is the time factor - it takes much longer to foster and work in relationship than to work alone. Funding for these kinds of research projects is not sufficient… I think it is the time factor, the establishment of trust, that does not get factored into the research equation. Had I placed my bets on CBPR publications for tenure, I wouldn't have gotten it.

There is also a lack of knowledge about how to do CER. A number of respondents who are not engaged with the community mentioned not having the training, mentorship, or experience to conduct CER.

Benefits While many barriers to CER remain, there are also numerous benefits. Continuing CER increases the likelihood of improvements and social change within communities. Both academic researchers and community partners can benefit from these collaborations. For instance, successful CER helps community partners find greater value in their work, increase their professional and interpersonal skills, build trust in academics, and make them more likely to participate in future studies.

Community engagement can also promote change in researchers’ work by encouraging them to empower, educate, share resources, and establish respectful and equitable relationships with communities they seek to support.

What Supports Collaboration?

For CE research to be successful, it must involve meaningful collaboration. That is, both researchers and community partners must work together to ensure that they conduct research with integrity, achieving both quality science and meaningful partnerships.

As one community member said, “If you are using the term ‘community’ in this research, then the community should have access to it.” Academic researchers ideally share access to data and other resources with others situated in the university, and CER also includes shared access to data and other resources, to promote transparency and meaningful collaboration. Access in CER means more than physical access. In addition to sharing files and data as appropriate, academic researchers and community partners need the time, financial support, training, and mentorship opportunities necessary to gaining new skills and critically considering their institutions’ conventions.

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Report brief: Community-Engaged Health Research — Experiences from the San Francisco Bay Area

What Are Best Practices?

Based on our review and analysis we provide the following list of best practices: Balancing Academic and Community Concerns Remember that the best community-engaged research (CER) meets community needs and satisfies intellectual interest. Neither motivation must give way entirely to the other, but both motivations must make room for the other.

Revisit regularly the complementary value of research and practice. Consider how the two best inform each other, how the tensions between them can be productive and generative, and how partners can contribute to the success of both.

Be aware of and accountable to local institutional conditions and reward structures.

Research organizations do not always value CER processes and products; for example, tenure and promotion committees may be unsure what value to assign CER. Work with committee members and senior colleagues to ensure that CER is appropriately recognized.

Remain responsive to—but not beholden to—concerns about the scientific validity and rigor of CER. Insist upon valid findings, while also helping colleagues to rethink restrictive understandings of validity. Pursue qualitative and quantitative data collection, adopting those methods that will encourage the participation of all team members and produce results that stakeholders will find compelling and convincing.

Talk with the local Institutional Review Board to clarify expectations for CER proposals. For example, does your work need review, or does the board consider it a needs assessment? How can you best allow for the contingencies and fluidity that are inherent and valuable to CER?

Building Relationships Make a long-term commitment to building and maintaining trust. Such trust will yield multiple benefits, provide groundwork for multiple studies, and ensure meaningful and sustained community/academic collaboration.

Join or, if necessary, establish networks of academic researchers and community members who share interests and commitments and who will offer ongoing opportunities for collaboration and input into the design, conduct, and dissemination of research.

Listen carefully in informal and formal meetings of these networks for evolving research interests. The questions that emerge from these long-term and organic relationships will reflect the most trusting and collaborative spirit of CE. Devote some time to getting to know one another outside of meetings and other formal settings. Share meals, attend one another’s celebrations, and talk to one another about interests and concerns without the immediate goal of advancing the research project.

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Report brief: Community-Engaged Health Research — Experiences from the San Francisco Bay Area

Make clear, sustained, and frank communication a priority of all community/academic relationships. With this sort of communication, questions, findings, and dissemination plans will necessarily reflect shared commitments and equitable processes.

Defining Roles and Responsibilities Ensure that research team leaders—for example, principal investigators and executive directors—take the time to build relationships across institutions. Their presence will signal to all team members that relationships are the products of genuine interest and not simply an instrumental gesture to be pawned off on less powerful members.

Clearly define partners’ roles and decision-making power. Role definitions should include the expectations as well as anticipated benefits, challenges, and rewards. When defining decision-making power, consider equity, when partners need to consult one another, and the extent of partners’ discretion.

Write and sign memoranda of understanding (MOUs) that detail roles and expectations. The best MOUs will expire, requiring partners to renew the MOU and, in the process, revisit the terms of the collaboration in order to improve, celebrate, or renegotiate their partnership.

Recognize academic researchers’ special responsibility to approach community partners with, on the one hand, humility about what they need to learn and, on the other, a recognition that it is not community partners’ responsibility to teach them everything they need to learn.

Conduct consistent and rigorous evaluation of CER outcomes and practice. Maintain a critical if appreciative eye when considering process and impact, learning from successes and failures.

Navigating Differences Pay close attention to how social identities and differences inform CE collaboration.

Consider, for example, how educational disadvantage make it difficult for people to participate fully or how gender, racial, or economic privilege may make it important for others to intentionally make room for their partners.

Keep in mind researchers’ reputation for exploiting the people they study. Whether deserved or undeserved, many collaborators bring this history to their CER and worry that they might be treated as guinea pigs or that they will not benefit from the research.

Ask before beginning CER whether community partners have the infrastructure, wellbeing, and resources necessary to participate meaningfully. Consider the same issues for the partnership itself—what are the material conditions necessary to our success?

How can we create them if they do not yet exist?

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Report brief: Community-Engaged Health Research — Experiences from the San Francisco Bay Area

Share resources as possible. Meaningful resources might include training in research and writing skills, access to professional networks, office supplies, support when applying for additional funding, and more.

Ask research partners what meeting times and locations will be convenient and comfortable for them. For community members, this will often be their offices or neighborhoods. Similarly, ensure that you’re communicating through media that are mutually accessible and satisfying, whether that’s in person, email, telephone, text, or conference call.

Ensuring Access to Data and Dissemination Establish clear and mutually satisfying agreements about partners’ access to the data.

Work with the local Institutional Review Board to ensure agreements comply with all necessary integrity and ethical guidelines while still promoting a spirit of openness and collaboration.

Strive to produce additional research projects that will be quickly useful to community partners. Such products might include literature reviews that CBOs and government agencies can use in funding proposals, program design, or program implementation.

Involve community partners in writing and dissemination processes to help ensure accurate presentation of data. Community partners might agree to, for example, co-author manuscripts, co-present at conferences, review early drafts, approve final versions, or be identified in acknowledgements.

This brief is a collaborative production of the following researchers at San Francisco State University: Jessica Fields, Research Faculty Center for Research on Gender and Sexuality, SFSU 835 Market St, Suite 517 San Francisco, CA 94103 crgs@sfsu.edu http://crgs.sfsu.edu Cynthia Gómez, Director Health Equity Institute, SFSU 1600 Holloway Avenue, EP 406 San Francisco, CA 94132 (415) 405-7554 http://healthequity.sfsu.edu Belinda Reyes, Director César E. Chávez Institute, SFSU 1600 Holloway Avenue, PP750 San Francisco, CA 94132 cci@sfsu.edu http://cci.sfsu.edu

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