Tackling Ethical Challenges in Community-based Participatory ResearchDurham University, 28th February 2013

PROJECT OUTLINES FOR WORKSHOPS

CONTENTS

WORKSHOPS 1: 12.00 – 13.00 PAGE1A Ethical issues in participatory health research, MAIN CONFERENCE ROOM

Participation in participatory health research: legislation, bureaucracy and access 2

1B Ethical issues in participatory museum and heritage research, OLD LIBRARY

Ethical issues in participatory museum and heritage research: Ownership and informed consent in perpetuity

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1C Ethical issues in participatory science research, PENNINGTON ROOM

Turing's Sunflowers

Catalyst - Citizens Transforming Society Tools for Change!

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WORKSHOPS 2: 14.00 – 15.002A Ethical issues in participatory arts and cultural research, MAIN CONFERENCE ROOM

Arts-based biographical research: women, well-being and community

Fulfilling Lives? Ethical Issues in participatory research exploring the use of leisure time by people with learning disabilities

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2B Ethical issues in participatory research for social justice, OLD LIBRARY

The use and potential of science education centres for tobacco control – work with young activists (W-West)

In whose interest? Ethical challenges in a collaborative action research project on high cost credit with households experiencing poverty

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2C Ethical issues in participatory environmental research, PENNINGTON ROOM

Keeping it fluid: participatory ethics in river management research

Permaculture, co-production and ethics in participatory research

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Tackling Ethical Challenges in Community-based Participatory ResearchDurham University, 28th February 2013

Workshop 1A: Ethical issues in participatory health research

Participation in participatory health research: legislation, bureaucracy and access

Contacts: Tina Cook (tina.cook@northumbria.ac.uk)and Helen Atkin (helen.atkin@northumbria.ac.uk) Northumbria University); Nicola Armstrong (nicola.armstrong@ntw.nhs.uk) Northumberland Tyne and Wear NHS Foundation Trust and Andrew Stafford (thelawnmowers@msn.com) Lawnmowers Independent Theatre Company

1. Description of the projects: This workshop will draw on the experience of three research projects: 1. Understanding research, consent and ethics: a participatory research methodology in a medium

secure unit for men with a learning disability. Funder: Department of Health National Programme on Forensic Mental Health Research and Development. The aim was to work with men with learning disability to ascertain what they understood about research and participation in research, to work collaboratively to develop understandings of how their knowledge could be enhanced, and to design a set of principles for informed participation in research for people with learning disability. (For more information see: Cook, T. and Inglis, P. (2012) Participatory research with men with learning disability: informed consent, Tizard Learning Disability Review, 17 (2): 92 – 101)

2. Towards Inclusive Living: A case study of the impact of inclusive practice in Neuro Rehabilitation/Neuro Psychiatry Services. Funder: Department of Health Policy Research Programme: Long Term Conditions. This project identified current perceptions of services for people with long term neurological conditions, investigated understandings of inclusive practice, articulated the impact of current forms of inclusive practice on the lives of service users and identified enablers and barriers to inclusive practice. (For more information see: http://www.ltnc.org.uk/Research%20pages/impact_inclusive.html)

3. Is there a pathway to recovery through care-co-ordination? Funder: National Institute Health Research, Research for Patient Benefit. This study is currently exploring whether there is a pathway to mental health recovery through care coordination. Through capturing the experiences of service users, carers and staff, this study aims to explore how care coordination is delivered and gain a consensus of best practice. Ultimately it will produce an archive of narratives of both recovery and care coordination and present a best practice care coordination toolkit.

All three projects involved working with people who have experience of the topic that is the focus of the study, to develop a participatory approach to researching that topic. Project one was as action research project where, as the men developed their understandings, they gradually began to take control of and design the approach to the learning opportunities. Project two started from a question asked by service users. It took a participatory approach where people with experience were involved in designing the shape of the research, generating and analysing the data and disseminating the learning. This was facilitated through academic researchers. The third project took a similar approach.

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Tackling Ethical Challenges in Community-based Participatory ResearchDurham University, 28th February 2013

2. Ethical issues anticipated in the projects: All three studies used participatory approaches to research. Anticipated issues across the projects included:

Needing to argue competence issues, particularly with the ethics committees Mental Capacity Act compliance issues – capacity to participate, capacity to consent and who

makes those decisions Confidentiality and anonymity issues Researcher safety issues

3. Ethical issues emerging and developing: A key issue that ran through all three projects was how people with experience gained access to the project, both as researchers and participants.Whilst the process of getting ethical approval through the REC system did throw up some interesting issues they were neither complex nor, in many ways, the core ethical issues: they were more details. The real issues occurred when the projects went live and people wished to participate either as a participatory researcher, or as participant. Barriers to participation came from a number of sources (often unexpected) and raised issues about how the right to participate is enabled in practice. When people wish to participate but are discouraged, dissuaded or actively told it is not possible by those upon whom they rely on to support their participations, or when access systems are so complex that people decide that to become participatory researchers is too complicated, this raises questions about what makes a process ethical. Enabling access is, therefore, the focus of this workshop. The themes explored, initiated through the use of a DVD, will include power, relationships, legislation and bureaucracy.

4. Learning from the experience of working with these ethical issues: As the workshop will be participatory this will be part of plenary on the day.

For more articles about studies that have used a participatory approach see http://healthresearchimpact.wordpress.com/category/articles

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Tackling Ethical Challenges in Community-based Participatory ResearchDurham University, 28th February 2013

Workshop 1B: Ethical issues in participatory museum and heritage research

Ethical issues in participatory museum and heritage research: Ownership and informed consent in perpetuity

Contacts: Helen Graham, University of Leeds, h.graham@leeds.ac.uk; Alex Henry, Curiosity Creative, curiosity.creative@hotmail.co.uk ; Aileen Strachan, Curious, St Mungo Museum of Art and Religious Life, Glasgow Life, Aileen.Strachan@glasgow.gov.uk

1. Description of the projects: This workshop will draw on two recent museum-based participatory projects and an interlinked AHRC-funded research project: ‘Partnership and Participation: Intellectual Property and Informed Consent’. Both the museum projects – Culture Shock! (based at Tyne & Wear Archives & Museums) and Curious (based at St Mungo Museum of Art and Religious Life, Glasgow Life) actively sought to record, display and collect personal testimony and responses.

2. Ethical issues anticipated in the projects: Both the museum projects clearly identified informed consent as an issue and developed all the usual approaches to securing consent from participants. Museum projects, where the personal testimony is accessioned into the collection, do add an additional layer of difficulty. Participants are not just asked to give consent for specific and clearly anticipated uses but, in effect, for any possible use forever.

3. Ethical issues emerging and developing: Both projects have been keen to add aspects of the personal responses to the collection because it is believed that this offers the best way of improving the quality and richness of museum collections and offers a way of appropriately valuing the participants’ contributions. However, it was assumed that the only way of managing this contribution was using the same methods of ‘transfer of title’ as are generally deployed with items of material culture. This raised some emerging issues, including participants wanting to use the potential of editing digital stories to change their story after accessioning. This has raised the question of whether and how museums should recognise their right over the story beyond the official ‘transfer of ownership’ – which has originally been imagined as a cut-off point.

4. Learning from the experience of working with these ethical issues: One of the key issues raised by exploring specific ethical issues is that they raise effectively political questions. One of the key political arguments made in favour of the full transfer of title approach was that the museum needs to distribute resources fairly and cannot focus ongoing and additional resources on a small group of people. This asks specific questions about how accountability to individuals, especially significant due to the personal nature of their donation, can be reconciled with accountability to the broader ‘public’. Finally the ethical dilemma of these projects also point towards the possibility of using the relative idea of fixity in material culture conservation as a resource for rethinking ideas of fixity in personal stories – might it be possible for museums to understand that they are collecting the idea of an authored contribution rather than a specific, fixed and completed piece of ‘historical evidence’?

Further details: Culture Shock! www.cultureshock.org.uk/home.html; Curious: www.glasgowlife.org.uk/museums/projects/curious/Pages/home.aspx ; H. Graham, R. Mason and N. Nayling (2012) Earning Legitimacy: Participation, Intellectual Property and Informed Consent, http://partnershipandparticipation.wordpress.com/; H. Graham (2012) (2012) ‘Modesty against the cuts: museums + public + democracy + personal‘, Open Democracy, 2nd October; A. Strachan (2012) ‘Curious: Stories, Culture and Ideas in a Changing City’, Engage 29

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Tackling Ethical Challenges in Community-based Participatory ResearchDurham University, 28th February 2013

Workshop 1.C: Ethical issues in participatory science research

Project 1: Turing's Sunflowers

Contacts: Erinma Ochu (erinma.ochu@manchester.ac.uk) The University of Manchester; Natalie Ireland (n.ireland@mosi.org.uk) MOSI (Museum of Science and Industry, Manchester) and Jonathan Swinton (jonathan@swintons.net)

1. Description of the project: Citizen Science is where the public participate in scientific research on a voluntary basis. Participation might include shaping the research question, crowdsourcing a dataset and/or analyzing data [1]. Turing’s Sunflowers [2] was a citizen science experiment led by MOSI and Manchester Science Festival to celebrate mathematician, Alan Turing, in the 2012 centenary of his birth [3]. Best known for cracking the enigma code during World War II, Turing was also fascinated by how mathematics works in nature, e.g. in pattern formation [4]. In sunflowers he noticed that the spiral patterns in the seed heads often followed the Fibonacci number sequence 0, 1, 1, 2, 3, 5, 8 (where the next number in the sequence is the sum of the previous two). Turing hoped that by studying sunflowers he might better understand how plants grow, but died before he could finish or publish this work [5]. Turing’s Sunflowers aimed to raise public awareness of Alan Turing’s scientific legacy by encouraging the public to grow sunflowers to create enough data to test Turing’s and other scientists' theories [6].

Who does it involve? Originally conceived by computational biologist, Professor Jonathan Swinton, who approached MOSI with his citizen science idea [7], the project was coordinated by public engagement specialist, Erinma Ochu, who was hired as a freelancer to work with MOSI’s Learning Team and Jonathan Swinton.

Aims & Objectives: 1) To raise awareness of Alan Turing’s work on Fibonacci numbers by involving 3000 people from Greater Manchester; 2) To explore the role of maths in nature through a series of public engagement activities; 3) To collect sufficient data to carry out the maths analysis and present the results at Manchester Science Festival.

The team worked with a range of cultural and community partners to develop a community engagement programme, inviting members of the Greater Manchester public to grow sunflowers, document this activity (through photographs, videos and social media), collect data from their sunflowers and submit this online. The data was then verified against photographs of sunflowers and analysed by Jonathan Swinton. The preliminary results were presented at Manchester Science Festival and online [7]. Manchester City Council provided free sunflower seeds, pots & gardening canes for Manchester schools & community & growing groups and raised the profile of the project through gardening festivals e.g. Dig the City and planting events in public parks in Manchester City Centre. Traditional and social media were used extensively to engage the public in the programme and to encourage partners and the public to host their own activities. These groups spread the word, planted sunflowers, played with ideas of mathematics in nature and sunflowers, submitted data, created learning resources and experimented with the results [8]. The project secured enough data to analyse and confirmed Turing’s observations whilst achieving a global media reach of 62 million people and participation of well over 3000 people in Greater Manchester. Project evaluation demonstrated that all of the aims and objectives were met [8].

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Tackling Ethical Challenges in Community-based Participatory ResearchDurham University, 28th February 2013

2. Ethical issues anticipated in the project: A range of ethical issues were considered at the planning stage, including data ownership, photographic consents, recognition of public contributions, the differing capacities of community groups and schools to participate and to understand the results. Whilst MOSI had the final say on all decisions, a creative workshop at the outset involved all partners in addressing and providing innovative solutions to challenges including ethical ones. It was agreed at the outset that participants would be credited on the Turing's Sunflowers website and on academic publications that resulted by linking to this page [9]. Members of the public were encouraged to visualize, document and share their progress through blogs, photographs, video diaries and learning resources. To avoid ownership issues over content, creative commons licensing was encouraged for people to share their content with MOSI and more widely. Sourcing user- produced content for use within MOSI’s website enabled recognition of participants’ contributions and saved a lot of time creating resources from scratch.

3. Ethical issues emerging and developing: Additional issues emerged at the first partner meeting and online via social media including considering environmental sustainability. Additional partners were sought or emerged (usually via social media) to advise on several issues, including enabling public access to the results data, whilst maintaining privacy over personal data. Whilst a map indicating where participants were growing sunflowers was used to drive participation and to recognise contributions, it was important to not pinpoint individual houses were sunflowers were grown.

Not everyone had the capacity to grow sunflowers outdoors as many people lived in flats or didn't have a garden. Whilst several large cultural partners grew sunflowers on site and invited the public to planting events, financial support was secured from the Royal Society for the Arts, Manufacturing and Industry and the Granada Foundation to widen community involvement. This meant that homeless individuals were involved and through Eastland Homes, a housing association, several hundred Manchester residents were engaged through a family fun day and a Turing’s Sunflowers float at Manchester Pride parade.

In terms of data ownership, people were given the option to submit their results to the research project. Only one person opted out of this. We felt it was important that people were opting in to the experiment. To ensure that people could understand the results, MOSI’s Turing costume put on a public show ‘cracking nature’s code’ explaining the results through stories. To facilitate an embodied knowledge of Fibonacci numbers and how they work, a community choir was invited to compose and perform a simple song that illustrated the Fibonacci numbers in music [7]. This was particularly important because the final evaluation revealed that some children and older adults found it difficult to count spirals.

4. Learning from the experience of working with these ethical issues: Creative and crowdsourcing solutions to ethical challenges seemed to work well as did the use of creative commons licensing on photographic content. We worked with a number of partners who could advise us along the way, including Open Data Manchester and BBC Outreach. It worked well, getting hackers to interpret and analyse the data, but it is also important to enable participants without digital expertise to analyse and understand the dataset. As part of the project legacy the project team is exploring ways to create learning resources to support this, including the possibility of working with LGBT groups to create resources. The crowdsourcing of resources could be achieved more effectively with more time planned to encourage this. However the project reached a wide diversity of people in terms of race, learning abilities, age and geographic location.

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Tackling Ethical Challenges in Community-based Participatory ResearchDurham University, 28th February 2013

Recommendations. Apply the ethical guidelines at the outset of the project [10] and contribute to and learn from crowdsourced Wikis that specifically address ethical issues for citizen science projects [11]. Build in more time to crowdsource and encourage co-production of learning resources.

Further details:[1] Tweddle, J.C., Robinson, L.D., Pocock, M.J.O & Roy, H.E. (2012). Guide to citizen science: developing, implementing and evaluating citizen science to study biodiversity and the environment in the UK. Natural History Museum and NERC Centre for Ecology & Hydrology for UK-EOF. [2] Turing’s Sunflowers website www.turingsunflowers.com[3] 2012 Alan Turing Year website: http://www.mathcomp.leeds.ac.uk/turing2012/ [4 Turing A.M. Morphogenesis, volume 3. Elsevier, 1992.[5] Swinton J. Watching the daisies grow: Turing and Fibonacci phyllotaxis. Springer, second edition, 2004.[6] Roger V.Jean. Phyllotaxis: A Systemic Study in Plant Morphogenesis (Cambridge Studies in Mathematics). Cambridge University Press, January 1994.[7] Turing’s sunflowers results: http://www.turingsunflowers.com/results[8] Sally Fort. (2012) Turing’s Sunflowers Evaluation Report for MOSI.[9] Turing’s Sunflowers acknowledgements: http://www.turingsunflowers.com/results/citizenscientists [10] Centre for Social Justice, Durham Ethical Guidance: http://www.dur.ac.uk/beacon/socialjustice/ethics_consultation/ [11] Stone J. (2013) Of Citizen Science, Ethics, and IRBS – the view from science online: http://blogs.scientificamerican.com/molecules-to-medicine/2013/02/05/of-citizen-science-ethics-and-irbs-the-view-from-science-online/

Workshop 1.C. Ethical issues in participatory science research

Project 2: Catalyst! Citizens transforming society – tools for change

Contacts: Mandy Naylor, Latent promise (mandy@latentpromise.org.uk), Rebecca Ellis, Lancaster University (r.ellis@lancaster.ac.uk) from Catalyst advisory group [1]

1. Brief description of the project: Catalyst [2] is a 3-year interdisciplinary research initiative funded by the Engineering and Physical Sciences Research Council (EPSRC) where community-academic partnerships explore how digital tools might facilitate social change by addressing three research goals:

What motivates citizens to participate in civic change? What are the next generation of digital tools that might support change in a civic setting? What lessons can be learned from reflecting on interdisciplinary research?

Who does it involve? Catalyst commissions a series of 6-9 month projects that develop novel digital technologies to address a social need. Through calls for proposals, ideas labs and community-led networking events, community-academic teams form to investigate Catalyst research goals with mutually beneficial outcomes. Disciplines involved include: Computing, Design, Environment, Sociology and Management. Catalyst is governed by an advisory group of Lancaster staff and community representatives offering strategic advice, monitoring impact and generating and sharing lessons learned [3]. A year on, there are four projects: Local Trade: a system which tracks trading

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Tackling Ethical Challenges in Community-based Participatory ResearchDurham University, 28th February 2013

patterns to encourage locally beneficial trading behaviour; Access ASD: enabling civic participation of people on the autism spectrum; Success in activist tweets: real-time predictions of the influence of activists’ tweets based on their language and Patchworks: using frugal (cheap) technology to encourage the homeless to access support services [4].

2. Ethical issues anticipated in the project: The original bid considered ethics around informed consent and working with vulnerable adults. Ethical issues are raised with the advisory group and project teams must consider ethical issues as part of their proposal. Catalyst uses PROTEE, a management tool to learn from failure/success and hosts an annual knowledge exchange event to reflect on lessons learned. Through team dialogues, PROTEE, draws out insights to support innovation, project management and interdisciplinarity.

3. Ethical issues emerging and developing:

Mutual Benefit: Achieving mutual benefit is challenging. Whilst Catalyst aims to develop academically novel technologies, often community organisations need ‘basic’ technological solutions, e.g. a new website or practical prototype. Project teams negotiate this by addressing additional needs alongside prototype development but this is often not planned at the outset. Through PROTEE dialogues, it was recognised that the social value of Catalyst also lies in a ‘social’ prototype or way of ‘co-working’ that builds trust, mutual respect, confidence and presents opportunities to learn, explore and experiment through the making of the physical prototype.

Time: Catalyst was designed around short project timeframes to maximize participation. However, project teams found it challenging to get to know one another, carry out in-depth research on social issues and co-design prototypes in such a short time span.

Ownership and Intellectual property: It took time to navigate institutional and departmental barriers (tendering policies, allowable research expenses, preferred suppliers) to award allocated funds to project partners and to agree fair intellectual property licensing. Consequently the first project teams were unclear about ownership or roles and responsibilities, which created tensions along the way.

Sustainability: Catalyst began at a time of significant budget cuts to capacity development in community organisations. The advisory group proposed that community-led support help address sustainability and capacity issues, particularly as Catalyst requires a significant commitment from community organisations. Follow up support was delivered by two community organisations (Shared Futures working with Latent Promise). This uncovered other challenges: e.g. one project team was able to access follow on research funding to further develop the prototype, however restrictions on funding criteria meant the community partner could not be included in the grant and this delayed any commercial application by the community organisation who originally conceived of the idea. The community lead is now being supported to seek alternative funding that can cover their costs.

4. Learning from the experience of working with these ethical issues:

Offer support to build community capacity before and after projects are selected to help community organisations consider if a research partnership will work for them and to pick up ethical issues during the lifetime of the project. With a community partner leading on this there can be a frank exchange that might not be possible when talking to the people funding your project.

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Tackling Ethical Challenges in Community-based Participatory ResearchDurham University, 28th February 2013

Use the CBPR ethical guidelines to guide project development, selection and planning so that it is embedded as part of the research process and time is given to consider, address and resolve ethical issues.

Embrace the social prototype: develop participatory approaches to project planning, budgeting and allocating roles and responsibilities based on passions, interests and abilities. Include budget and time allocations for training and support to achieve this. This has been valuable on Access ASD, which involves many different organisations.

Learn from projects and project resources that address similar ethical challenges. EPSRC helpfully signposted us to other projects and networks they had funded facing similar challenges including FRIICT [5] and CC Network+ [6]. Attending NCCPE [7] and AHRC connected communities events, has also been of value. Armed with examples from related projects the Lancaster research support office helped implement a procedure for awarding projects, which included use of a generic public license to ensure communities could afford to develop their prototypes further and a work plan with roles and responsibilities, key contacts for project support and the budget outlined.

Catalyst is still reflecting on best ways of working and will publish interim lessons learned shortly. Further lessons will differ depending on the projects being funded and the type of links made between organisations. A recent project comprises several community organisations plus a public body working together and is likely to throw up unforeseen ethical issues but using guidance will help.

Further details:[1] Catalyst Advisory Group web link: http://www.catalystproject.org.uk/content/advisory-group [2] Catalyst Website: www.catalystproject.org.uk [3] Whittle JW, Ochu E, Ferrario MA, Southern J and McNally R Beyond Research in the Wild: Citizen-Led Research as a Model for Innovation in the Digital Economy Proceeding Digital Futures 2012, Aberdeen 2012 [4] Patchworks video: http://youtu.be/ydPcxuixhAw [5] Framework for Responsible Research & Innovation in ICT website: http://responsible-innovation.org.uk/frriict/[6] Communities and Culture network+ website: http://www.communitiesandculture.org/ [7] National Coordinating Centre for Public Engagement website: www.publicengagement.ac.uk

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Tackling Ethical Challenges in Community-based Participatory ResearchDurham University, 28th February 2013

Workshop 2A: Ethical issues in participatory arts and cultural research

Project 1: Arts-based biographical research: women, well-being and community

Contacts: Maggie O ‘Neill (Maggie.o’neill@dur.ac.uk) Durham University and Susan Mansaray (purplerose6611@hotmail.co.uk), Purple Rose Stockton-on-Tees

1. Description of the project: This arts-based research project was undertaken in partnership with the Regional Refugee Forum North East and Purple Rose Stockton. We sought to explore ways of seeing women’s lived experiences, well-being and sense of community in the context of their lives in the Teesside. The research builds upon previous collaborative work on ‘Race, Crime and Justice’ in the North East that was funded by the Ministry of Justice, Durham University, Northumbria and Teesside Universities. The research used walking, storytelling and visual/photographic methods to help make visible women’s lived experiences of living in Middlesbrough, Stockton and Hartlepool and what community and community safety mean to them. Participatory arts (PA) and participatory action research (PAR) methods were used to conduct a critical recovery of women’s lives and experiences. Story walks helped to create individual and collective narratives about what it is like to be a new arrival, an asylum seeker, and refugee and, for some women, refused asylum seeker. Women were asked to draw a map from their home in Teesside to a special place marking along the way places and spaces that were important to them. We talked about the maps and places and agreed upon a collective walk that we would undertake together, taking photographs and recording the voices of the women about the places they took us too. We then met with the photographs in a workshop to discuss the photographs and choose the images for exhibition. The principles underpinning PAR and PA are:

inclusion, participation, valuing all local voices, Community driven and sustainable outcomes.

Community co-researchers worked with two academics, a sociologist and a psychologist from Durham University, one of whom was a Fulbright Scholar, to conduct the research and support the creation of visual representations of women’s lives, well-being and ‘community’. This research was supported by the Regional Refugee Forum North East, Purple Rose Stockton and the Race, Crime and Justice Consortium. We set out to document and share the stories of women seeking asylum in visual form and also how their stories could be woven together to tell a collective tale of the search for sanctuary. The stories of the women were varied, with some fleeing persecution from their governments and others from kinship-based violence, whether forced marriage, female circumcision, or domestic abuse. Some came into political opposition with the government, while others suffered persecution in their local communities. They were journalists, nurses, teachers and mothers from Africa, South Asia and the Middle East. Many left children behind when they fled, while others took young ones in tow. Still others were single women without family support of any kind.

2. Ethical issues anticipated in the project:

Sensitivity needed when collaborating with women who are seeking asylum or may have been refused.

Timescale/duration of the project.

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Tackling Ethical Challenges in Community-based Participatory ResearchDurham University, 28th February 2013

Arts based outputs. Collaboration of different stakeholders—women, project, film maker, organisations. Clear ethics

framework agreed by all. Agreement over media involvement, especially regarding the filmic work.

3. Ethical issues emerging and developing:

Research ethics as a process not an end stop or event. Agreements over the film and what is and is not represented in film. One woman detained on day one of the photo/walks.

4. Learning from the experience of working with these ethical issues:

Relationships and benefits of strong and clear ethics in participatory arts based research from design through to creation of outputs /exhibition.

Further details: http://www.dur.ac.uk/resources/sass/research/RaceCrimeandJusticeintheNorthEast-WomensLivesWell-beingExhibitionBooklet.pdf

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Tackling Ethical Challenges in Community-based Participatory ResearchDurham University, 28th February 2013

Workshop 2A: Ethical issues in participatory arts and cultural research

Project 2: Fulfilling Lives? Ethical Issues in participatory research exploring the use of leisure time by people with learning disabilities.

Contacts: Christine Atkinson, Phillip Walton (Gateshead People), Se Kwang Hwang (sekwang.hwang@northumbria.ac.uk) Northumbria University and Helen Charnley (h.m.charnley@dur.ac.uk) Durham University.

1. Description of the project: Fulfilling Lives is a participatory research project exploring the use of leisure time by adults with learning disabilities. The aim of the project is to find out the kind of things that people in Gateshead want to do and the barriers that may be preventing them. The project, funded by Beacon North East, involves Gateshead Counciland Gateshead People, a self-advocacy group run by and for people with learning disabilities, along with a range of supporting partner agencies. Researchers from Durham University and Northumbria University have been supporting and guiding the process.

2. Ethical issues anticipated in the project: Power relations between people with learning difficulties, practitioners, researchers and

funders. Potential for marginalising people with learning disabilities because of time pressures. Questions of validity arising from concerns about understanding by participants: i) informed

consent and ii) data collection Ownership of the project and its outputs

3. Ethical issues emerging and developing: Lack of clarity about balancing participatory processes, leadership and accountability. Whose interests does the research serve? How can the work undertaken have an ongoing impact?

4. Learning from the experience of working with these ethical issues: The need to have a clear set of shared values from the start. It is worth investing time in

developing a common understanding The benefits of co-researching The use of visual methods in reducing power differentials The need for perseverance (and grasping opportunities) in disseminating findings to have

optimum impact in a context of public funding cuts

Further details: Gateshead People http://www.yvc.org.uk/GatesheadPeople.html

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Tackling Ethical Challenges in Community-based Participatory ResearchDurham University, 28th February 2013

Workshop 2B: Ethical issues in participatory research for social justice

Project 1: The use and potential of science education centres for tobacco control – work with young activists (W-West)

Contacts: Dr Andrew Russell (a.j.russell@durham.ac.uk) Department of Anthropology and Co-Director Centre for Social Justice and Community Action; Brian Pringle (BPringle@ashscotland.org.uk) ASH – Scotland.

1. Description of the project: ‘Don’t Get Me Started’ is a Durham University/W-West Glasgow/ASH-Scotland/Espacio Ciencia (Montevideo) and CIET (Centro de Investigación para la epidemia del tabaquismo) Uruguay collaborative research project on the use and potential of science education centres for tobacco control. This project, funded by an HEA National Teaching Fellowship award, the Santander mobility grant scheme and the Centre for Medical Humanities at Durham University, involved six members of W-West (the Glasgow-based young person's advocacy group for tobacco control) and co-researchers from Durham University, the Greater Glasgow and Clyde Health Board and ASH-Scotland in a visit to 'Respira Uruguay' at the 'Espacio Ciencia' science education centre, Montevideo, in February 2012. The purpose of the visit was to learn more about this unique interactive exhibition, which is designed to discourage young people from smoking, and to consider how it could be adapted for use in a UK context.

2. Ethical issues anticipated in the project: This project has a participatory rhetoric, but has it enabled the full participation of the young people involved from beginning to end? Could it ever do so?

Involvement and input of young people from a wide age spectrum (aged 9-19) Accepted ethical guidelines were followed, including consent letters; fulsome risk assessment

work required by Greater Glasgow and Clyde Health Board which, while important, didn’t seem to capture what might be the real risks involved in undertaking a visit of this nature. Rather, they reflected the fears and anxieties of senior managers about taking young people to South America, even though Montevideo is in reality generally much safer for young people than Glasgow!

Outputs from the research: long-term - a UK version of Respira Uruguay, with appropriate ‘cultural detailing’; meanwhile conference presentations and an article. Involvement of and ownership by all 12 visit participants (and our hosts?) in these things.

3. Ethical issues emerging and developing:

Ownership of a resulting exhibition (and associated management issues). Funding for such a venture – what funds would be acceptable, from what sources? Ensuring the ‘intellectual property rights’ in developing such an exhibition are respected and

benefits transfer back to those who had the initial idea for it in Uruguay. Wealthy benefactor syndrome – what can cap Uruguay? Maintaining the momentum (both of

W-West as a tobacco control activist group and with the goal of developing an exhibition), particularly when funding is tight.

The relationship between a high income country like the UK and a low to middle income country like Uruguay is, in development terms, normally a one-way street. We challenge the basis of perceptions like this with our eagerness to learn about and value the Uruguayan public health experience.

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Tackling Ethical Challenges in Community-based Participatory ResearchDurham University, 28th February 2013

4. Learning from the experience of working with these ethical issues:

Sometimes, one just has to have a good idea and lead on it, acknowledging the power dynamics that exist, and head off into unknown territory – take chances!

Young people as tobacco control activists – keen awareness of tobacco as a social justice as much as a health issue, and the importance of developing these aspects in any resulting exhibition.

The care and attention taken by the young people involved in this project, and their good humour at all times!

Uruguay is in many respects light years ahead of the UK and Europe in tobacco control. We learnt a lot, while sharing information on areas of tobacco control that the UK is arguably further ahead on than Uruguay (e.g. youth work, cessation services, mental health and prisons).

Further details: Blogs: http://medicalhumanities.wordpress.com/2012/02/13/dont-get-me-started-an-international-collaboration-on-young-people-and-smoking-participatory-action-research-visit-uruguay-february-2012/; http://medicalhumanities.wordpress.com/2012/02/15/the-smoking-interest-group-in-uruguay/; http://medicalhumanities.wordpress.com/2012/02/19/sig-in-uruguay/; An English language video of the Espacio Ciencia exhibit can be seen on: http://latu21.latu.org.uy/espacio_ciencia/en/index.php?option=com_content&view=article&id=127%3Avideos&catid=42%3Aexhibiciones&Itemid=101

Workshop 2B: Ethical issues in participatory research for social justice

Project 2: In whose interest? Ethical challenges in a collaborative action research project on high cost credit with households experiencing poverty

Contacts: Jan Flaherty (jan.flaherty@durham.ac.uk) and Sarah Banks (s.j.banks@durham.ac.uk), Durham University; Tracey Herrington (traceyherrington@thrive-stockton.org.uk) and Greg Brown (mail@thrive-teesside.org.uk). Thrive; and Mark Waters (markw@church-poverty.org.uk), Church Action on Poverty.

1. Description of the project: Debt on Teesside is a two-year collaborative action research project, which started in 2011, funded by a grant from the Northern Rock Foundation. It is a partnership between Thrive, a community organising venture based in Teesside operating under the aegis of Church Action on Poverty (CAP), and Durham University’s Centre for Social Justice and Community Action. The project developed from Thrive’s previous work, which found significant problems with high cost credit use and debt in poorer households. As action research, there is an explicit focus on bringing about change, both at household level and at the organisational and policy level through collective action. The project has developed a programme of household mentoring on money management, linked to community-based campaigns focussing on the exploitative practices of high cost credit companies, especially doorstep lenders. The action research aims to investigate what factors shape and/or constrain financial choices made by participants; examine the impact of mentoring on behaviour and attitudinal change and choices around money management; and to contribute to community campaigns.

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Tackling Ethical Challenges in Community-based Participatory ResearchDurham University, 28th February 2013

24 households were recruited to take part in the project, with one person being a ‘key contact’, who gave detailed financial information in an initial interview. At the time of recruitment, no key contacts reported being in paid work, but two had a partner in paid work. All other households received income solely from benefits or a mixture of benefits and tax credits. With limited access to mainstream credit, such households often turn to high cost credit sources for money and goods including: rent to own stores, catalogues, doorstep lenders and payday loans with APR charges ranging from 437% to more than 4,000%. All participating households had problem debts, ranging from £340 to more than £10,000, many accrued from high cost credit sources.

Each household was offered a mentor, who would aim to meet them monthly and maintain contact via telephone and text messages between meetings. Some households did not take up the mentoring offer, and with others the contact has been variable. The role of the mentor is to look at the priorities identified by the household, signpost services and organisations and support positive change, preferably away from high cost credit choices towards more financially sustainable options. On the campaigns and policy front, Thrive and CAP have been instrumental in changing the lending practices of three significant rent-to-own companies and are currently working on an ‘affordability’ campaign highlighting the need for loan companies to take into account whether people can afford the loans on offer.

2. Ethical issues anticipated in the project: The main issues anticipated were around how the partnership would work, and some of the complexities relating to confidentiality if people from the local community acted as mentors. A partnership agreement was made between Thrive and Durham University, outlining the responsibilities of each organisation. The University was the grantholder, hence responsible for the project overall, and was primarily responsible for the research aspects of the project, whilst Thrive was responsible for recruiting and supporting households and mentors and for campaigns. Accepted ethical guidelines were followed, including informed consent of households and safeguards regarding anonymity.

3. Ethical issues emerging and developing:

Consent - Some participants were willing to give consent and sign up to the project on an initial visit from a Thrive worker, before learning the full details of what was involved. To ensure that participants understood the implications of their involvement and uses of the information, the researcher ensured that prior to the initial interviews, the consent form was read through in detail and examples given of possible uses of the data.

Mental health issues - During the course of the project, it became clear that a significant number of participants were experiencing mental health-related problems. This led to discussion by team members about potential exploitation of participants, including consideration of the extent to which their consent was fully ‘informed’. One of the approaches used in the campaigning element of the project is to hold public assemblies, at which people with direct experience of high levels of debt are asked to speak. Whilst this gives voice to people facing financial exclusion, it also exposes people to potential public embarrassment and may cause emotional pain. The need to support people fully through this process is very important.

Donations - An unexpected issue arose regarding a donation accepted by Thrive. In the middle of the research project, Thrive’s Management Committee accepted a donation of several thousand pounds from the staff fundraising efforts of a high-cost credit company, Buy as You View. Thrive had previously campaigned against the unethical practices of this company and is currently working with the company to reform some of its ways of working. The Durham University partners found out about the donation after it had been accepted. This caused some tension and debate within the

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Tackling Ethical Challenges in Community-based Participatory ResearchDurham University, 28th February 2013

project team. Thrive’s community organising approach is premised on the idea ‘no permanent friends, no permanent enemies’, meaning that their tactics include working with organisations against which they have campaigned in order to effect reform. Taking money from Buy As You View was not regarded as compromising the integrity of Thrive’s work nor the research. The two University staff, however, felt that accepting a donation of this kind was contributing to giving credibility to a high cost credit company whose core business revolved around exploiting poor people. It might also damage the integrity of Thrive’s work, and by association the action research project.

4. Learning from the experience of working with these ethical issues: Differences in values and ways of working may not always be apparent at the start of a project, so it can be helpful to discuss how to deal with differences at the start. In future projects, the donations issue could be discussed beforehand by partners, possibly with scenarios of when and from whom it might be regarded as un/acceptable to take a donation and in what circumstances each partner should consult the other about the implications.

Further details: www.dur.ac.uk/beacon/socialjustice/researchprojects/debt_on_teesside/

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Tackling Ethical Challenges in Community-based Participatory ResearchDurham University, 28th February 2013

Workshop 2C: Ethical issues in participatory environmental research

Project 1: Keeping it fluid: participatory ethics in river management research

Contact: Prof Rachel Pain, Department of Geography, Durham University, Co-Director Centre for Social Justice and Community Action, rachel.pain@durham.ac.uk

Brief description of the project: This workshop draws on Building Adaptive Strategies for Environmental Change with Rural Land Managers, a RELU-funded research project to develop and implement Participatory Action Research (PAR) in river catchment management. The PAR group consisted of social and physical geographers from Durham University, and members of the Lune Rivers Trust. Traditionally, land management issues are researched - that is academics are often commissioned by government agencies to carry out a piece of research, which is then used to inform legislation or policy changes that local communities then have to implement. This approach has often failed to either tackle the root causes of land management problems or to be well thought of by local communities. Our novel approach to participation is PAR. At the heart of PAR is the belief that research should be done with and for communities. The role of academics here is as facilitators not researchers. This has not been applied to this area before in the UK and so this project is experimental.

Ethical issues anticipated in the project: The usual ethical issues in participatory research were considered and discussed; a protocol for decision-making, confidentiality, authorship, ownership of data and outputs, etc.

Ethical issues emerging and developing: The main issues that emerged were about: (i) how to conduct research that was critical and accountable, without alienating any of the many

stakeholders/users of the rivers;

(ii) how to influence the way that policy-making operates – top-down, from a bottom-up project approach.

Learning from the experience of working with these ethical issues: The project worked well as a collaborative venture where decisions were shared, and evaluations showed that everyone in the group was happy with the experience of knowledge co-production, and with the outcome. The key issue of how to change the structure of knowledge production at a large scale persists.

Further details: Pain, R., Whitman, G., Milledge, D. & Lune Rivers Trust (2012) Participatory Action Research Toolkit: an introduction to using PAR as an approach to learning, research and action, http://www.dur.ac.uk/resources/beacon/PARtoolkit.pdf

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Tackling Ethical Challenges in Community-based Participatory ResearchDurham University, 28th February 2013

Workshop 2C: Ethical issues in environmental research

Project 2: Permaculture, co-production and ethics in participatory research

Contacts: Tom Henfrey (t.w.henfrey@dur.ac.uk), Durham University and Wilf Richards (wilf.abundantearth@googlemail.com) , Transition Durham/North East Permaculture Network

1. Description of the project: The presentation draws on experiences of several collaborations over the past few years relating to the general theme of Permaculture, particularly its applications in community development such as Transition Towns.

2. Ethical issues anticipated in the project: Permaculture is a design approach rooted in three overlapping ethics: earth care, people care and fair share. Permaculture design applies of a set of principles derived from observations of natural systems to the design of human habitats and organisations that reflect and promote its three core ethics. The prevailing ethical theme of these collaborations has been how approaches rooted in these ethics, along with established methods for acting upon them, transforms the way in which ethical issues arise and negotiated within research partnerships.

3. Ethical issues emerging and developing: We have developed a deeper understanding of the affinities between permaculture ethics and those of collaborative research, and how applying Permaculture principles in the design of research projects can allow a foregrounding of ethical issues as an integral part of the research process, not a separate issue potentially conflicting with academic or other criteria.

4. Learning from the experience of working with these ethical issues: This learning has been systematised as part of the background to a set of guidelines for research involving Transition and other forms of community-led sustainability action. It also raises broader questions about the compatibility of ethics of environmental protection and social justice with institutional ethics that are often implicit. Situating research in relation to established ethical frameworks with clear linkages to practice allows hidden ethics to be revealed and challenged.

Further details: www.transitionresearchnetwork.org

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