Guidelines for Research Involving Community Engagement (CEnR)

Community Engaged Research at the University of Miami

Note: This document is for informational and guidance purposes only.  If there are any questions, please contact the Human Subjects Research Office for more information. 

• What is Community-Engaged Research (CEnR)?

The University of Miami defines CEnR as a collaborative, transparent and equitable partnership between those who conduct research on behalf of the University of Miami and the people who will be impacted by the research (stakeholders). This involves all aspects of community research from the planning of a study, implementation and conduct of the research and dissemination of research results. The process typically (but not always) starts with a topic of importance to the community and has the aim of combining acquired knowledge and the intention of instituting community well-being.

• What is the purpose of CEnR?

The University of Miami fosters campus to community collaboration by engaging the University’s resources in enrichment through educational and research strategies that directly link academic scholarship to public practice.  The University of Miami fosters strong connections with the South Florida community, integrating civic engagement and community-based partnerships into the curriculum, and promoting community service.  The community may be comprised, but not limited to, external affiliates by location, special interests, similar experiences, or shared value members. Communities may share characteristics such as age, background, ethnicity, gender, or sexual orientation.

• When is Institutional Review Board (IRB) review required in CEnR?

The University of Miami’s research charter requires investigators to obtain IRB approval before conducting any human subject research. Research proposals must be submitted in the IRB system for appropriate review.  

CEnR requires IRB approval.  The IRB proposal process requires that the researcher follow best practices for respectful and productive relationships. When preparing an initial application, investigators should include appropriate details that allow the IRB to ensure research is conducted ethically and in compliance with federal, state, and local and institutional regulations/ requirements.  This may include, but not limited to collaborative identification of problems, identifying data collection methods, developing study implementation strategies, and/or providing feedback and consultation regarding interpretation and dissemination of results. The goals of CEnR are consistent with the regulatory aims of IRBs, such as avoiding insensitivity to cultural concerns, use of participants from one community for research that primarily benefits individuals from other communities and exploitation of vulnerable communities.  CEnR and IRBs should focus on the domains where their goals overlap, and their processes are compatible; however, broader goals such as negotiations between the academic and community voices do not fall within the scope of the IRB process.

CEnR considers AAHRPP accreditation Element I.4.C.

More information on whether IRB approval is required can be found here:

https://hsro.uresearch.miami.edu/submit-to-the-irb/does-my-project-need-review-by-the-irb/index.html   

• Why Community Engaged Research (CenR)?

CenR allows research to more accurately target the development, implementation, and analyses of circumstances/ scenarios that may impact the community as well as to develop more valid interventions that improve community level outcomes. This may enhance research validity, as well as help ensure that research findings foster social change at the local level. Proactive engagement of stakeholders may help overcome common research challenges regarding local competence of research methodologies, tools, and processes, recruiting subjects, identifying relevant disclosure aspects for the consent processes, and helping to meaningfully translate research findings and terminology to subjects. This approach yields an iterative dynamic that is more sensitive to realities “on the ground” as they emerge and more responsive to numerous perspectives on the research design and implementation.

• How does CenR differ from traditional research?

CenR is committed to improving the overall research engagement and literacy of communities, helps foster trust and builds on a reciprocal avenue of communication to improve research process for all involved.  CenR has numerous goals, most of which are consistent with traditional scientific aims, such as improving the scientific validity and reliability of knowledge gained and incorporating relevant expertise in the research team; however, community members are seen as participants or partners with all the human protections afforded traditional research. Furthermore, summary data and research findings are discussed with community representatives prior to their widespread dissemination, if appropriate, in consultation with the community.

A CEnR project must have a research design that clearly describes empirical methods aligned for systematic inquiry for the community while also partnering with stakeholders to provide input and guidance into some or all the phases of the research process.

• How does CenR define “partnership”?

CEnR defines partnership as a sustained collaboration between institutions of higher education and communities for the mutually beneficial exchange, exploration, and application of knowledge, information, and resources.  These may include, but not limited to, a private business, industry, or commodity group partners; public nonprofit, foundation, or government partners; and other groups that may not be formalized as organizations.

Community partners can inform the researcher process by:

• Incorporation of non-academic members in the research process
• Providing a deeper understanding of a community and population’s unique circumstances
• Increasing researcher sensitivity to the community
• Determining the feasibility and appropriateness of the project
• Consider how cultural or community attitudes may affect the research
• Providing immediate feedback to the researchers

• How are community partners engaged in research?

At the core of CenR is the understanding that a representative group will be involved in a meaningful way in as many stages of the research design as is possible through a mutual commitment to co-learning and ultimately process changes.

Several tools are available.

• info (http://www.ces4health.info)
• CORUS (https://ctsacorus.org/home)
• http://ctb.ku.edu/en/who-we-are#.Ul74z9LIsmE
• http://depts.washington.edu/ccph/pdf_files/self-assessment-copyright.pdf

An underlying pillar for CEnR to be effective is full transparency and the sharing of ideas and experiences is extremely important for CenR to be effective. Trust in and between the groups involved in the CenR process is also essential. While the sharing of power is an important element for CenR, it also presents some challenges. Academic researchers have the name recognition, expertise, and reputation to receive funding for projects aimed at improving health outcomes in a community. Community leaders have access to the participants and the expertise to promote community capacity. All parties must share the power equitably for the benefit of the community.

Any products or tools developed because of the research are also shared equally among all stakeholders. This not only enhances the relationships and trust that were built during the process; it ensures that the programs or knowledge can be sustained well after the research is complete.

• How do you best present an emergent idea/design that will involve CenR?

Engage the University of Miami Clinical and Translational Science Institute (CTSI) early on in study development to see if questions are particularly sensitive and/or raise the risk around a potential disclosure of information once data is collected. Consider use of a question bank and be clear, concise, and specific wherever possible.

All IRB applications at University of Miami must be submitted through the IBIS Research-IRB and must be conducted in accordance with Investigator Manual, HRP-103.

Items recommended to consider when writing a CEnR protocol:

• Is there at least one community partner involved in the proposed study? If yes, provide details about each community partner and their role.
  
  
• Include the community’s role in planning, conducting and/or disseminating results of the research. When appropriate, include a plan to inform community members about the results of the research study and utilize community members to help disseminate results.
  • Are there group harms/risks with unflattering or “bad” findings about the group?
  • Even if those outside the community can’t identify someone, can they identify each other?
    
    
• Describe any risks and benefits to the community. Consider:
  • How the research might further stigmatize vulnerable populations?
  • Are there emotionally charged topics and possible fractures in the community?
  • Describe what has been put in place to minimize the risks to the community.

• Consider how cultural or community attitudes may affect your research. In writing your protocol consider such things as:
  • Are the research methods sensitive to and appropriate for the community (language, literacy, cultural or community attitudes)?
  • Are recruitment methods appropriate to the community?
  • Is the consent process appropriate?
    
    
• Have appropriate permissions been obtained? If reliance is required, consult HRP-103 Chapter 4.  
  
  
• Should community research partners be trained in human subject protection?