Tackling ethical issues and dilemmas in community-based participatory research: a practical resource

This project will bring together community partners and academics from 4 existing Connected Communities (CC) projects in a workshop and small working groups to share ideas and experiences and develop guidance and learning materials on ethics in community-based participatory research (CBPR). The project will be supported by international advisors from 5 countries and the National Coordinating Centre for Public Engagement (NCCPE) as a partner.

Recently interest has grown in CBPR - that is, research tackling issues relevant to communities of place, interest and identity and involving affected people in planning, undertaking, disseminating and using research. This approach is often adopted to give people who are usually the objects of research greater control over the process, to embed research skills in communities and to increase research impact. CBPR approaches are regarded as particularly useful in the context of 'hard to reach' communities, and in research on sensitive issues. Many ethical challenges arise in CBPR - particularly in relation to the power of professional researchers, the blurring of boundaries between community members and researchers and the inflexibility of institutional structures (including university research ethics committees) to cope with unpredictability and complex partnership arrangements.

Aims: To deepen understanding of the complex ethical issues and challenges in CBPR and develop ethical guidance, case studies and practical exercises from the UK in a range of settings and disciplinary areas for use in future CC and other research projects.

Objectives
1)undertake a rapid review of ethical issues in published findings of all CC projects and a detailed synthesis of 4 existing CC projects.
2)Engage in dialogue with a range of stakeholders, including community partners from the projects, international advisors and NCCPE to identify further ethical issues, share and analyse ethical problems and ways of tackling these.
3)Produce a document and web-based materials offering ethical guidance, case studies, case examples with commentaries and learning materials relevant to CBPR.
4)Encourage improvement in institutional research ethics review, policies, procedures, training and support to take account of the challenges and complexities of CBPR.
5)Develop greater awareness/improved practice among university and community researchers and other stakeholders in relation to ethical issues in CBPR.

The project will
1) Finalise 'guidelines on ethical conduct' to be drafted by the current Durham CC project.
2) Produce 4 case studies, each featuring a different CBPR project, written to show how ethical principles are applied in practice and to highlight ethical issues in the project (e.g. how a partnership agreement was put in place).
3) Produce 4 case examples of specific ethical problems/dilemmas, written from the perspective of a research participant, outlining details of particular ethical difficulties (e.g. discriminatory attitudes in the research group). Each case example will be followed by 2 or 3 commentaries - at least one written by a community researcher and another by an academic or research student (including international advisors).
4) Practical exercises for use by CBPR teams and in training for academic staff, students and community partners.

The materials will be published on the NCCPE website as a downloadable pdf file and also in sections, to which further cases, commentaries and exercises can be added over time as an on-going resource in partnership with Durham University's Centre for Social Justice and Community Action.

The project has potential to benefit academics, research ethics committees, third and public sector bodies, funders/sponsors and communities where research takes place. Dissemination by NCCPE and other bodies will result in raised awareness of ethical issues in CBPR amongst researchers, funders and participants; and improved policies and processes.

Beneficiaries (other than academic):

Third sector organisations: Community and voluntary organisations involved in community-based research; charitable trusts that fund research and/or community projects; overarching research bodies such as the Committee on Publication Ethics.

Public sector & related bodies: Local, regional and national organisations/agencies involved directly in research or interested in disseminating ethical guidelines to members/interested parties, e.g. Local Authorities, Health Authorities and Trusts, Educational Institutions (including schools), Research Councils, UK Research Integrity Office, the National Coordinating Centre for Public Engagement, Museum Association Ethics Committee.

Communities: the communities of place, interest and identity that are the focus of CBPR projects will benefit if individuals and organisations involved in research are more aware of potential and actual ethical issues and have more confidence in tackling them. These communities include neighbourhoods and groups that are easily ignored ('hard to reach'); face poverty, poor health, or other forms of disadvantage; may experience conflict and discrimination; and have capabilities to play a role in tackling social and economic issues themselves through action research. Ethically sensitive research that engages more community members and builds trust and capacity will offer greater opportunities to tackle pressing social and economic problems.

Economic and societal impact: The preliminary findings of the Durham University CC scoping study indicate that a CBPR approach may be adopted in research on sensitive issues (e.g. attitudes of people with disabilities to assisted suicide; female genital mutilation) and in communities variously categorised as 'marginalised', 'disadvantaged' or 'hard to reach' (e.g. young people in care; minority ethnic groups). It is both a way of reaching these communities (through community members as research partners) and maximising the impact of research (e.g changing health-related attitudes and behaviour; developing indigenous capacity to influence and change policy/practice).

The proposed project has potential to influence those involved in devising and disseminating ethical policies and procedures. The ethical guide aims to inform, influence and change organisational culture and practices, especially in relation to complex ethical issues of ownership, power, control and responsibility. The existence and promotion of clear, concise, user-friendly guidance, case studies and exercises on ethics in CBPR will contribute to impact in relation to:

1. Raising the profile of CBPR in areas where it is not necessarily considered and where institutional barriers often prevent and limit the adoption of CBPR approaches - e.g. clinical settings, scientific research.
2. Improving guidance and procedures on research ethics in public sector and other institutions to ensure they are more amenable to CBPR, striking a balance between allowing risk-taking and innovation and preventing harm to participants and researchers and reputational damage to institutions.
3. Encouraging researchers involved in CBPR to consider carefully how to ensure greater community participation, with awareness of the challenges, and to take full account of perspectives and rights of potential community partners.
4. Developing deeper and more sustainable partnerships for CBPR through working together on ethical issues at the outset and throughout the research process.
5. Developing capacity of community groups and individuals involved in CBPR to anticipate and handle ethical issues and undertake research of genuine community benefit both in partnership with professional researchers and on their own.
6. Improving the quality of research undertaken in and by local communities by placing principles of social justice and sustainability at the heart of the process and planned outcomes.