The definitions provided within this document are specific to the NIHR Guiding Principles for Community Engagement and Involvement (CEI). They are to help understand the principles and do not reflect wider use of the terminology.
Community engagement and involvement (CEI)
The processes and practices by which individuals and groups within a community actively contribute to, and influence, the research process. These terms emphasise partnership working between researchers, community members and stakeholders, and are aimed at improving the relevance, value and conduct of health research.
Active listening
A focused attention given to another speaker that improves mutual understanding by observing, and responding to, verbal and non-verbal messages.
Appropriate
Refers to methods, interventions, and practices that are culturally sensitive, ethically sound and effective within the specific community researchers are working with.
Collaboration
Working together with community members, leaders and organisations to conduct research that is mutually beneficial. This goes beyond consultation, it implies active partnership and shared decision making to achieve an agreed goal.
Community
The ‘community’ comprises the people who are affected by the research whether they take part in the research or not. They may also be stakeholders. The broad term ‘community’ includes: patients, individual community members, carers, families and their neighbours, community leaders, non-governmental and civil society organisations, faith groups, service commissioners and providers, and policy and law makers.
Communities are not necessarily defined by a particular geography but may be based on a common interest.
Critically reflective practice
The process of continually examining and questioning the impact of the research on the community. Involves deep thinking and ongoing analysis of both the research process and outcomes, taking into consideration different perspectives and re-examining power dynamics. In turn, making decisions based on personal ethics and values.
Dissemination
Sharing research findings, knowledge and insights with a broad range of stakeholders in various ways including academic papers, conferences, websites, leaflets, radio and tv, policy documents, plays and magazines. Ensuring the results of the research are accessible, understandable and actionable.
Engagement
Where information and knowledge about research is communicated and disseminated to community members and local population groups. For example, through science festivals, debates, discussions, open days at research centres, and raising awareness through social media and mainstream media.
Equitable CEI
Ensuring fairness and inclusivity in practices and processes so that all community members are aware of, understand, and are enabled to participate in CEI activities. Equity recognises that each individual has unique circumstances and needs. The emphasis is on fair distribution of resources, opportunities, and benefits across different population groups, particularly those who are disadvantaged or marginalised to ensure they are active contributors to research and benefit from it.
Ethical
Conducting research in a manner that respects the rights, dignity, perspectives and wellbeing of all involved. It is about fairness, transparency and respect for individuals and communities involved in the research process.
Homogeneous
The term homogenous means consisting of qualities that are the same. Communities are NOT homogenous. In global health research understanding the composition of communities is crucial. Recognising differences and variation is necessary to ensure all groups and subgroups within a community are represented and their specific needs are addressed.
Intimidated
Where community members may feel anxious, frightened or apprehensive when interacting with researchers or getting involved in activities. This could arise from several factors such as power dynamics, lack of understanding, cultural differences between researchers and community creating mistrust, past negative experiences, and consent and confidentiality.
Involvement
NIHR defines involvement in research as research being carried out ‘with’ or ‘by’ members of the public and communities rather than ‘to’, ‘about’ or ‘for’ them. It is an active partnership between community members, organisations and researchers that influences and shapes research.
Local
Refers to a particular geographical area or neighbourhood. This could be a village, town, city or region within a country or across multiple countries, taking into consideration community or population characteristics.
Marginalised
A process of social exclusion in which individuals or groups are disadvantaged or discriminated against within society, being denied economic, political, and/or symbolic power and pushed towards being ‘outsiders’. These groups often have less access to resources, opportunities and decision-making, resulting in poorer health outcomes.
Meaningful CEI
The active involvement of community members throughout the research process, working collaboratively with researchers and other stakeholders to develop and agree approaches to CEI and its evaluation. Meaningful CEI ensures research is relevant, respectful and beneficial.
Monitoring, Evaluation and Learning
Monitoring, evaluation and learning describes the process of systematically collecting information (monitoring), using frameworks and analysis to generate insight (evaluation) to improve development outcomes and ensure accountability for the resources used to achieve them (learning).
Mutually beneficial
Where both the researchers and the community gain valuable outcomes. Researchers acquire vital data and insights for advancing health interventions, while communities benefit through increased capacity and awareness, and improved health services. A reciprocal relationship ensuring research is ethical and has a lasting impact.
Organisations
These are entities such as, non-profits, government agencies, academic institutions, non-governmental organisations (NGOs), civil society organisations (CSOs) and community-based organisations (CBOs).
Partnerships
Refers to collaborative relationships between researchers, community members and other organisations. These are based on trust, shared goals and mutual respect, ensuring all stakeholders contribute their unique strengths and perspectives.
Power dynamics
Collaborations between researchers and community members can have an unequal distribution of power due to one group having more influence or control over decisions than the other, usually developed through historical, societal and political hierarchy. Understanding group dynamics and balancing power and influence can motivate individuals.
Power sharing
The redistribution of decision making authority, resources and control from traditionally dominant institutions to local people and communities. Subsequently, local needs and priorities will drive the research agendas, fostering more equitable partnerships.
Relevant
Directly addressing the specific health needs, priorities, and challenges faced by local populations, so that research is grounded in the cultural, social and economic context of the community.
Stakeholders
Individuals or groups who have an interest, influence or role in the research process and its outcomes. They can include local community members, researchers, funding agencies, NGOs, healthcare providers and government bodies.
Sustainable
The research practices, outcomes, and interventions are designed to have a lasting and positive impact on the communities health and wellbeing beyond the duration of the research.
Value
The significance or benefit of the research for the communities involved. It means the research addresses relevant health issues, enhances local knowledge and capacities, and leads to practical positive health outcomes. It also encompasses ethical conduct, cultural sensitivity, and equitable distribution of benefits.
Vulnerable
This refers to susceptibility to experiences of harm, discrimination, or disadvantage due to various factors. These factors can include cultural, economic, geographic circumstances or personal characteristics such as race, sex or disability. Segments of population groups with these experiences may face increased risks, have limited access to resources or opportunities, and require specific support and protection to ensure their well-being and equal participation in society.