Community Engagement

It is never too early to begin engaging with the community.

Health research aims to collect information that will provide a basis for future action.

Community engagement is a critical element of medical and health research, which broadly defined emphasises how communities are collections of individuals with an interest, and/or stake in the conduct and outcomes of the study; and interactions with the research team. As such, a community is considered to include the residents of an area, where health research is conducted, potential study participants, all other residents in the immediate locality and stakeholders from outside the area, including the ministries of health, public healthcare authorities, NGO’s, local research institutes and researchers. 

A specific community engagement strategy – and associated activities – is contingent on the nature of the research it accompanies. Therefore, community engagement occurs along a spectrum: from reaching out and informing, to consulting, involving, collaborating and sharing leadership, and includes a wide variety of activities, such as patient/participant and public involvement events, consultation regarding study activities through community advisory boards (CABs), to assist increasing community awareness of the role of community in research, study recruitment and retention outcomes. In addition, community engagement can support ethical good practice as it ensures the community members are well-informed about the research and have a platform to ask questions or challenge procedures, they are unsure or uncertain about.

In low-income contexts, economic, educational and power disparities between study staff and participants can contribute to misperceptions, rumours and myths in communities. This could result in study refusals and withdrawal from studies that could lead to premature study closure, and/or inadequate sample size which compromises researchers’ ability to generate high-quality evidence.

The goals of community engagement are:

  • Respect individuals, communities and stakeholders
  • Build trust and social relationships
  • Increase awareness in communities on their role in the research process
  • Determine appropriate benefits, minimise risks, burdens, and exploitation
  • Support the consent process which is ongoing throughout a trial
  • Understand vulnerabilities and researcher obligations
  • Gain permissions, approvals, and build legitimacy
  • Achieve recruitment and retention targets

The principles and practises of community engagement are to:

  • Initiate and/or build and sustain relationships with the broader and participant close community
  • Enter into partnerships with other healthcare workers, service providers and broader stakeholders at community level
  • Negotiate partnerships with community healthcare workers and health service providers in the area
  • Partner with community-based initiatives in providing general health, HIV/TB/Health, information relevant to the community, research education and raise awareness at a community level
  • Facilitate specific research understanding, relevance and create a participant supportive environment for the conduct of research
  • Ensure that well informed and appropriate trial participants are enrolled into protocols
  • Maintain high levels of retention through participant’s immediate and community-wide support
  • Convey the needs, priorities and ideas of the community back to the research team
  • Disseminate the findings of the research to the community
  • Impact the community through improved facilities, knowledge, policy and understanding
  • Contribute evidence through research outputs for general communities’ advocacy
  • Take part in general HIV, TB and STI national strategic plans at community, district, provincial and national levels.

Respect individuals, community and stakeholders

Respecting communities entails acknowledging, informing, explaining to, consulting, listening to and/or collaborating with those who have a stake in the research or programme. Stakeholders include the study participants, but more broadly can include community, district, provincial, or national parties.

LevelKey Stakeholders
Community & District levelHealth facilities Schools Community-based formations like women’s, youth, sports and other similar structures Faith-based formations, like churches and traditional healers Traditional and community leaders Street committees Community non-governmental organizations Community Development Forums District and sub-district AIDS councils Health committees Civic organizations Institutions of higher learning or university student formations Community-based social media influencers Media organizations
Provincial and National levelNon-governmental organizations Government departments Community development and health Advocacy groups and networks. Provincial and national AIDS councils where key sectors are targeted, like women’s, youth, men’s, children’s, NGO and or research sectors. Research Ethics councils or committees Social influencers and specific causes’ ambassadors

 

Build trust and social relationships

Trust plays a critical role in the enrolment decisions of potential study participants. When faced with challenging scientific concepts, a complex study rationale and uncertain benefits, potential participants often rely on the extent to which they trust study staff or the research institution(s) involved. Differences in education levels, income, familiarity with scientific concepts often stimulate doubt and mistrust between individuals, communities, stakeholders and the research institutions and their staff. Being cognisant of these disparities, it is essential to translate the language of science, into a community friendly language.

This process is illustrated by the maturity model of community engagement (see figure x).

Determine appropriate benefits, minimise risks, burdens, and exploitation

Community engagement can help to ensure that researchers provide appropriate benefits to the community – such as reimbursement and compensation for the time demands of study participation – and that participants are not unduly burdened. Compensation and incentives must be tailored to the particular setting because of their potential to cause undue inducement. Community engagement can also bring broader benefits, such as building health or research literacy, and improving basic infrastructure.

Support the consent process

Valid informed consent is a critical element of ethical health-related research. Valid consent entails (1) providing potential participants with adequate information about the proposed study; (2) potential participants understanding what is proposed and (3) participants being able to make a voluntary decision to participate. Community engagement can improve the validity of informed consent through a process of engagements to ensure a sound understanding of the proposed research, proposed study concepts and rationale.

For the researchers, community engagement provides a vehicle for ongoing communication to the community on the research which goes beyond the informed consent form or information sheet to promote understanding and reduce mistrust. Community engagement provides an opportunity for the researchers to identify social and economic factors that could affect recruitment and retention.

Understand vulnerabilities and researcher obligations

New ethics guidelines and many ethics scholars have moved away from labelling an entire class of individuals as vulnerable (e.g. pregnant women, children, ethnic minorities, etc.) and now consider vulnerability as not being confined to an individual or groups but as arising from social, economic and political conditions. Community engagement can help identify specific characteristics that may render individuals vulnerable, and this can aid in identifying special protections and researcher obligations needed for these individuals to be included in studies. Care should be taken that community engagement does not lead to activities that could be seen as excessive benefits or single out hard to reach groups and lead to an increase in stigmatisation.

Gain permissions, approvals, and build legitimacy

Community engagement can assist in gaining permissions, approvals and legitimacy for a planned study. Although legitimacy is formally gained by ethics approval and permissions from local authorities, community engagement encourages buy-in from influential stakeholders and politicians otherwise not involved with the research.

Achieve recruitment and retention targets

Achieving recruitment and retention targets is necessary to maximise a research study’s intended social value. A failure to achieve these targets usually means that the study is underpowered or prematurely terminated. This is potentially a waste of resources and puts enrolled participants at risk for no good reason. Although sometimes difficult to disentangle from the range of factors that influence recruitment and retention in a study, community engagement has been identified as improving recruitment and retention in several studies.

Setting up community engagement

Setting up community engagement requires a commitment from the researchers and funders as human resources and financial support is necessary to embed community engagement in practice. In the hierarchy of influence in health research, successful community engagement strategies should support and benefit from building a trust relationship and respecting all participants by acknowledging, informing, explaining to, consulting, listening to and/or collaborating with those who have a stake in the research or programme. The benefits to this time spent as…

  • Community members are aware of the health-service needs of various groups within communities, and support their provision.
  • Health service providers are non-judgemental and considerate in their dealings with adolescents, and provide them with the health services and commodities they need.
  • Points of health service delivery carry out actions that enable adolescents to obtain the health services they need, and are appealing and friendly to adolescents.
  • Adolescents are aware of why, when and where they can obtain health services, feel able and willing to obtain them, and do in fact obtain them when needed.

BY YOLISWA NTSEPE (MA, PhD)
ADOLESCENT PROGRAMMES MANAGER

UPDATED NOV 22, 2023

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REFERENCES & ADDITIONAL RESOURCES:

Community engagement and ethical global health research.
Global Bioethics, 31:1, 1-12,
Bipin Adhikari, Christopher Pell & Phaik Yeong Cheah (2020) DOI: 10.1080/11287462.2019.1703504
https://doi.org/10.1080/11287462.2019.1703504

Community engagement and investment in biomedical HIV prevention research for youth: rationale, challenges, and approaches.
Ellen, J. M., Wallace, M., Sawe, F. K., & Fisher, K. (2010). JAIDS Journal of Acquired Immune Deficiency Syndromes54, S7-S11.