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

Lead Research Organisation: Durham University
Department Name: School of Applied Social Sciences

Abstract

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.

Planned Impact

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.

Publications

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Centre For Social Justice And Community Action, Durham University (2012) Community-based participatory research. A guide to ethical principles and practice

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Centre For Social Justice And Community Action, Durham University (2013) Doing research together: How to make sure things are fair and no one is harmed

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Centre For Social Justice And Community Action, Durham University (2013) What is doing research together?

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Centre For Social Justice And Community Action, Durham University (2014) Beth yw gwyneud ymchwil ar y cyd?

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Centre For Social Justice And Community Action, Durham University (2014) Gwneud ymchwil ar cyd:Sut i wneud yn siwr bod pethau'n deg ac nad oes neb yn cael niwed

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Centre For Social Justice And Community Action (2013) Tackling Ethical Challenges in Community-based Participatory Research

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Banks S (2013) Everyday ethics in community-based participatory research in Contemporary Social Science

 
Title Forum Theatre: Participatory ethics through participatory theatre 
Description An 8-minute film produced by the Centre for Social Justice and Community Action, Durham University, UK and LGBT Youth NW, Manchester, about communities and universities working together to develop ethical research to accompany the booklet, Performing ethics. 
Type Of Art Film/Video/Animation 
Year Produced 2014 
Impact The film has been used in running training workshops on participatory theatre through participatory ethics - contributing towards developing the awareness and understanding of ethical issues of workshop participants, who may be community partners, postgraduate students, and academic researchers. The film has also been placed on the National Coordinating Centre for Public Engagement website, used by NCCPE to raise ethical awareness and illustrate the use of participatory theatre. 
URL http://www.youtube.com/watch?v=nzzl60EihC4
 
Title Four short films relating to ethics in community-based participatory research 
Description Four films 1. A coinquiry group - relating to a group of academics and community partners studying research ethics together 2. Growing ethics - relating to a community-university research partnership focusing on a young women's allotment project 3. Breaking down barriers - covering the work of Lawnmowers Theatre group (people with leanrig disabilities) and its partnership with an academic 4. Durham Conference, Feb 2013 - an overview of highlights from a conference focusssing on ethical challenges in CBPR 
Type Of Art Film/Video/Animation 
Year Produced 2012 
Impact The films are used in running training workshops on ethics in CBPR, and contribute towards developing the awareness and understanding of ethical issues of workshop participants, who may be community partners, postgraduate students, and academic researchers. The films have also been placed on the National Coordinating Centre for Public Engagement website, used by NCCPE to raise ethical awareness. 
URL https://www.dur.ac.uk/beacon/socialjustice/ethics_consultation/films/
 
Description Key ethical issues arising in community-based participatory research:

1. Partnership, collaboration and power
2. Blurring the boundaries between researcher and researched, academic and activist
3. Community rights, conflict and democratic representation
4. Ownership and dissemination of data, findings and publications
5. Anonymity, privacy and confidentiality
6. Institutional ethical review processes
Exploitation Route Ethics guidelines used by universities, community organisations, etc.

Ethics cases, participatory theatre, dilemmas cafes in teaching/training
Sectors Creative Economy,Education,Environment,Healthcare,Leisure Activities, including Sports, Recreation and Tourism,Government, Democracy and Justice,Culture, Heritage, Museums and Collections

URL https://www.dur.ac.uk/beacon/socialjustice/ethics_consultation/ethicsresearchprojec/
 
Description AHRC has used the ethics guide in Connected Communities funding calls. Many community and voluntary sector organisations are using the ethics guidelines The ethics guide was used as the basis for a statement of principles for the International Collaboration on Participatory Health Research
First Year Of Impact 2012
Sector Communities and Social Services/Policy,Education,Environment,Healthcare,Leisure Activities, including Sports, Recreation and Tourism
Impact Types Cultural,Societal

 
Description Ethical Issues in Community-Based Participatory Research
Geographic Reach Multiple continents/international 
Policy Influence Type Influenced training of practitioners or researchers
Impact Tracking the use of materials that have been produced, including Community-based Participatory Research: A Guide to Ethical Principles and Practice (2012), along with case studies and films for use in planning/evaluating CBPR and training community-based researchers and academics. The ethical guidelines were adopted with some modifications by the International Collaboration on Participatory Health Research, and there is now an ethics working group, led by Sarah Banks. A book of ethics case studies is being developed, with over 20 cases submitted to date. Participants at events report finding the ethics materials useful. The UK Community Partner Network has used the guidelines in their events and training, whilst Scottish Women's Aid has developed an ethical framework for research based on the guidelines. The ethical guidelines are included on the webpages of several organisations, including Community Research (New Zealand), Living Knowledge (Denmark) and have been cited in Arts and Humanities Research Council Connected Communities funding calls and in a recent AHRC report, Living Knowledge, 2016, by K. Facer and B. Enright.
 
Description ESRC Impact Acceleration Account
Amount £7,603 (GBP)
Organisation Durham University 
Sector Academic/University
Country United Kingdom
Start 02/2015 
End 07/2016
 
Description Action research for social justice seminar 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact 1. Action Research for Social Justice: Changing the Climate for Research and Teaching, Durham University, Wednesday 17th June 2015, 12.30-13.45
a) What happened - a presentation and group discussion with Mary Brydon-Miller, Miriam B. Raider-Roth, Lisa M. Vaughn, University of Cincinnati, USA.
b) Participants: 25 people attended from community organisations, university staff and postgraduate students.
c) Summary of any feedback received - useful to hear examples of different approaches and projects.
d) Any learning/reflections - we can learn a lot from researchers from other countries.
e) Any follow-up activities - development of partnership between research centres in Cincinnati and Durham.
Year(s) Of Engagement Activity 2015
URL https://www.dur.ac.uk/beacon/socialjustice/ccfestival2015/
 
Description Conference, workshops, presentations (2012-13) 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Type Of Presentation workshop facilitator
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact Engage 2012 Conference, Bristol, Dec 2012.
Postgraduate research training, Newcastle University, Jan 2013.
Tackling ethical issues in CBPR, Conference, Durham, 28 Feb 2013.
Ethical Challenges in CBPR, Public Lecture, Huddersfield University, 6 March 2013.
Ethics in CBPR, Workshop, London, 11 March 2013.
Connected Communities Showcase, London, display stand, 12 March 2013.


Ethics in CBPR, session on training course for international participatory health research, Northumbria University, 13 March 2013.



Presentation, Faculty of Social Sciences and Health Research Ethics Committee, Durham University, 13 March 2013.

Various conferences, workshops and presentations, which promoted and used the ethics guide and case studies
Year(s) Of Engagement Activity 2012
 
Description Dilemmas Cafe (Manchester, September 2015) 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Dilemmas café facilitated in Manchester at event organised by UK Participatory Research Hub, September 2016. Very popular, caused interest and requests for further cafes. Stimulated Sarah Banks to write a guide for facilitators.
Year(s) Of Engagement Activity 2015
URL http://ukprn.weebly.com/resources.html
 
Description Dilemmas Café (Durham, June 2016) 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact 3. Dilemmas Café: Using Dialogue to Explore Ethical Challenges in Community-based Participatory Research, Durham University, Tuesday 23rd June 2015, 17.30-20.00
a) What happened - a community partner, a postgraduate researcher and an academic each presented a real life ethical dilemma arising in participatory research. The audience participated in world café style dialogue on each dilemma around tables, feeding back at the end. It was facilitated by Sarah Banks (Durham University) and Sue Shaw (community partner).
b) Participants: 23 people attended, mainly university staff and postgraduate students, with 8 participants from community organisations.
• Summary of any feedback received - here is a summary of what people found most useful about the event: live examples of ethical dilemmas; being able to share with others honestly about key issues in research that are seldom talked about; bringing different perspectives together and preparing for the unexpected; stimulating thinking about the research process and ensuring no harm comes to the people involved in research.
c) Any learning/reflections - this model works well and can be used in teaching and learning about ethical issues in all research (or indeed ethics in any setting).
d) Any follow-up activities - the next meeting of the UK Participatory Health Network will include a dilemmas café, as participants found the model very useful and stimulating.
Year(s) Of Engagement Activity 2015
URL https://www.dur.ac.uk/beacon/socialjustice/ccfestival2015/
 
Description Ethics in Participatory Research (Durham, November 2015) 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact A workshop on ethical issues in participatory research, introducing the ethics guide and associated materials, using some of the cases. Aimed at community-university partnership research.
Year(s) Of Engagement Activity 2015
URL https://www.dur.ac.uk/beacon/socialjustice/events/pastandrecentevents/2015/
 
Description Participatory Ethics through Participatory Theatre (Durham, June 2015) 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact 2. Participatory Ethics through Participatory Theatre, Durham University, Monday 22nd June 2015, 12.30-16.00
a) What happened - an intensive small group workshop introducing participants to Forum Theatre as a means of reflecting on ethics in participatory research, facilitated by Frances Rifkin (Utopia Arts) and Sarah Banks (Durham University).
b) Participants: 11 people attended, mainly university staff and postgraduate students, with 2 participants from community organisations.
c) Summary of any feedback received - participants found it useful to learn about
the theory base of forum theatre; the experience of forum theatre as a participant;
the danger of using theatre without understanding the process and possibilities.
d) Any learning/reflections - half a day is a good introduction, but people were keen for more depth.
e) Any follow-up activities - interest in further workshops on participatory theatre.
Year(s) Of Engagement Activity 2015
URL https://www.dur.ac.uk/beacon/socialjustice/ccfestival2015/
 
Description Podcasts relating to ethics in CBPR case examples 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact Short audio recordings of a range of community partners and academics commenting on written case examples of ethical challenges in CBPR projects

Interest generated linked to case studies
Year(s) Of Engagement Activity 2013
URL http://www.publicengagement.ac.uk/work-with-us/current-projects/ethics-cbpr