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Key Issues: Politics and Ethics of Partnership Research

The field of ethics in research is wide-ranging and complex. Questions of ethics are, basically, questions of conscience/opinion about moral issues and therefore what you see here are some of our thoughts on these value-laden issues. There are also many, very diverse, ethical issues raised by partnership research and we cannot pursue all possible themes here. And, as with many other areas of this work, your own position on these issues will be affected by the context within which you are working. For these reasons, we are not suggesting that we can supply you with answers to these dilemmas. Rather, we hope that some of our thinking will be helpful to your thinking.

The whole of this website, in a sense, is addressed to a fundamental question of ethics in research. This relates to who should do research and how. In the document What is Partnership Research? we describe four aspirations for conducting research in partnership. All of these have ethical dimensions:

  1. All partners are actively involved in the research process.
  2. All partners can influence the design, planning and conduct of the research.
  3. Different partners bring different things to the research, so that University Researchers (for example) are not experts in all things.
  4. The research ‘outputs’ may be different from ‘traditional’ research and more in line with the interests, needs and intentions of the research participants. Research conducted in partnership may produce non-traditional outputs like ‘photo records’ (see Working with pictures and Life Story Work) that are more accessible than formal written reports. This approach recognises that a key audience to the research is the people who have participated in the research (and those who share their experience in wider society).

Of course, each of these aims raises further questions and challenges. See What is Partnership Research? for an indication of those challenges and Partnerships: Questions and Challenges for further discussion. Working in this way also raises particular ethical challenges. For a brief discussion of these challenges see Politics and ethics of partnership research.

It has increasingly been recognised by research funding bodies that 'users' should be involved in research. Some examples are the Joseph Rowntree Foundation, the Department of Health, the Social Care Institute for Excellence and the National Lottery's Big Lottery Fund. The Economic and Social Research Council, through the Research Methods Programme, funded the partnership research project on which this website draws (Award number: RES-333-25-0002). This suggests that there is increasing recognition of the role of service users in research. The processes of bidding for research funds may, however, be inaccessible to some service users. This raises questions about the extent of their involvement in the process.

Many other people have raised questions about the "official sanctioning of the user voice" (Mort et al, 1996) and how much it has been "perhaps more influenced by consumerism and the ethos of markets than ideas concerning the rights of citizens to participation" (Truman and Raine, 2002). This is part of an on-going debate concerning the politics and ethics of partnership working.

The following issues in the conduct of partnership research all raise other ethical questions and dilemmas.

Planning Partnership Research
At what point in the planning process do you begin to work with your research partners? As we have discussed elsewhere (see Partnerships: Questions and Challenges), Fisher (2002) says, much ‘partnership’ work still involves “users being asked to join a process where the research issue and the methods have largely been defined beforehand, and where the outcome remains under the control of researchers” (p.306). This is often inevitable because research funding bodies require you to pre-specify your goals and outcomes.

You may not be able to spend time (because an employer will not sanction it) with possible research partners in order to develop a joint bid for funding. In addition, it may be difficult to work with 'service users' on a joint bid only to find that the bid was unsuccessful and there are no resources to continue the project.

The only long-term solution to such dilemmas relates to the development of an on-going relationship with service users, who understand the problems associated with research funding. Probably, this means working with them on a number of different projects which may have little or no money attached to them. This may mean everyone working on a voluntary basis. This approach does have, however, the enormous benefit of allowing time for the development of a positive working relationship. All parties will hopefully feel more confident to contribute their ideas and steer the course of the project with such a relationship in place.

Another potential barrier to the planning of partnership research projects relates to the role of ethics committees. Increasingly, research proposals will be scrutinised by an ethics committee and sometimes more than one committee. For example, ethics committees exist in organizations that are responsible for the welfare of research participants (such as the NHS) and organizations responsible for managing research and researchers (such as universities). Independent research funding bodies (such as charities) may also have their own ethics committees. Research proposals which only concern one organization (responsible for the funding, the management of the project and the research participants) will most likely need to be approved only by that organization. However, approval can become particularly complicated when research involves several organizations. For example, a research project on the lives of service users of mental health services, which is being run from within a university and partly funded by an external funding source, may need to be approved by three separate ethics committees (the NHS, the university and the external funder). This process can be very time-consuming and somewhat daunting and does not necessarily 'sit' comfortably alongside small-scale, small budget, locally organised research projects.

Ethics committees have two main aims:

Although ethics committees set out to protect participants in this way they may have other, less fortunate, effects on research. For example, some ethics committees are not yet sufficiently prepared for the idea of 'full' partnership working and may struggle with the idea that many elements of the work will emerge over time. Most ethics committees require the applicant to pre-specify objectives, methods and suggested outcomes. The particular issues raised by partnership research may delay or further complicate processes of gaining ethical approval from ethics committees.

It has also been argued that ethics committees can exert an unhelpful influence on research processes in general. They may have very narrow definitions of what counts as knowledge and 'good' scientific method, and fail to recognise the value of small scale, qualitative or case study work. This may also have a negative effect on partnership work, as it is more likely to fit within the qualitative/interpretive paradigm.

Ironically, ethics committees may also encourage what some researchers in this field would regard as unethical practice. For example, when applying for ethical approval for one project we were asked to draw up a consent form for participants to sign. This is seen, in a general sense, as 'good practice'. However, many of the participants could not read or write and we felt it would be inappropriate to have others sign on their behalf. Instead, we wanted to use a verbal system of negotiating consent. This was seen by the committee as "inadequate" because it was "open to abuse". Of course, all systems are 'open to abuse' and rely on trust, to a certain extent. However, it may appear that by following protocols, all concerns have been met. This, in itself, is potentially problematic in relation to ethics. We are of the view that many questions of ethics are raised in the course of a research project and will need to be revisited.

Contracts/formal agreements and partnership working
Elsewhere we talk about the benefits of drawing up a formal agreement with your research partners at the beginning of a project. A contract can be one way of formalising expectations, understandings and expected outcomes rather than assuming that all parties feel comfortable with the status quo. It is also the case that a contract can signal appropriate acknowledgement of the contribution of all parties. A contract may recognise (for example) that if people are not getting paid, there are other ways in which they can be rewarded for their contributions (see Benefits and payments)

It is also the case, however, that a formal agreement may have unfortunate consequences similar to those outlined above. One disadvantage is that roles, responsibilities and rewards are seen to have been defined and, perhaps, cannot be redefined. It may, then, be a good idea to build into your contract, the idea that it will be revisited and can be renegotiated. It is also the case that the negotiation of such a contract will need careful thought. Who is 'in charge' of these negotiations and what impact will that have on the outcome?

It is often the case when such agreements are drawn up with research participants (as compared to research partners) that they will contain clauses on issues like anonymity and confidentiality. It is more likely, in the case of agreements with research partners, that you will want to discuss questions of authorship and 'ownership' of the research. (See McClimens, 2004 for a discussion of some related issues.)

In respect of any written documents there is also the issue of accessibility to consider. Any information (or 'knowledge') which is text-based presents barriers for people with learning difficulties who don't read or have difficulty reading; those who do read may also face comprehension barriers (Kevan, 2003). Townsley et al's (2003) research emphasises the importance of tailoring information to the specified target audience. They advocate the involvement of people with learning difficulties in the production of accessible information, suggesting that in some instances they may be well placed to take a lead role. Although Townsley et al include some 'guidelines' on producing accessible information, they emphasise that 'it is essential to avoid the idea that following a checklist can negate the need for user involvement' (Townsley et al 2003: 42).

Doing research together for whom?
The practice of conducting research in partnership raises many on-going challenges in relation to negotiation, collaboration and power sharing. Where we can we have raised these issues in separate documents under the different activities you might pursue. See Doing the fieldwork and Data Analysis and Writing in partnership. Also see Partnerships: Questions and Challenges for a discussion of some of the complexities of partnership working.

One ethical issue that is not explicitly raised in these documents relates to accountability in research. This is about much more than making sure that language is accessible or trying to include people in decision-making and relates to the social model of disability. The social model sets out to avoid the 'individual-blaming philosophy' of the individual or medical models. Instead, the emphasis is on understanding the "ways in which physical, cultural and social environments exclude or disadvantage people labelled disabled" (Barnes, 2003:5). (For more information on the social model of disability see: http://www.bcodp.org.uk)

Of course, one of the institutions that excludes and disadvantages people who are labelled disabled is the academy (or universities/other places of learning). Research conducted within the social model may raise tensions, then, for researchers who critique the academy of which they are a part. The social model also suggests that accountability for research lies with researchers who have a responsibility to ensure that research processes and outcomes put disabled people first. See What is partnership research? for related discussions. Most researchers are subject to the “regulatory influence” (Barnes) of the academy and may find it difficult to fulfil responsibilities both to the academy and to non-academic audiences.

Ethics, methods and partnership research
There is a long-standing debate about whether particular research methods or approaches are exploitative or diminishing of research participants. Positivist science tends to be preoccupied with 'method' and 'objectivity' (Williams and May, 1996) - see Comparing qualitative and quantitative research. That is, positivist science suggests that there are particular tools, which when employed properly will produce good objective science. However, this also means that positivism has a reputation for separating the knower and the known and for ignoring the situatedness of knowledge. That is, the methods that are employed ignore the fact that knowledge is socially constructed (see A beginner's guide to qualitative/interpretive research). This helps to explain Hartsock's (1997: 369) comment that positivist knowledge is "discovered from nowhere in particular". People with learning difficulties, however, have frequently been the 'subjects' or 'objects' of such knowledge (Radford, 1994); they are frequently told what their 'reality' is, rather than being asked to report on their realities or to control research about their lives.

Feminist researchers (e.g. Harding, 1993), disabled people and members of other non-dominant groups have criticised the 'objectivity' and 'neutrality' of positivist approaches, arguing that they represent the interests of researchers rather than the 'truth' of an ostensibly objective, neutral and distanced knower.

It is also the case, however, that work conducted within an interpretive paradigm can be equally exploitative of participants and result in equally reductive accounts. There is no guarantee that researchers will give up power or control of research processes or outcomes simply because they use qualitative methods like interviewing. It is true that the epistemology on which the interpretive paradigm rests suggests that the meanings of participants should lie at the heart of the endeavour. This perhaps, then, means that researchers working within this paradigm are more likely to consider wider roles for research participants, a renegotiation of responsibilities and opportunities to control the work.

There are a number of useful websites that consider ethics in social research although none that concentrate solely on issues of ethics in partnership research.

References
Barnes, C. (2003) 'What a Difference a Decade Makes: reflections on doing 'emancipatory' disability research', Disability & Society , 18, 1, p3-17.

Kevan, F. (2003) 'Challenging Behaviour and Communication Difficulties', British Journal of Learning Disabilities, 31, p.75-80.

Fisher, M. (2002) 'The Role of Service-Users in Problem Formulation and Technical Aspects of Social Research', Social Work Education, 21, 3, p305-312.

Harding, S. (1997)

Harding, S. (1993) 'Rethinking Standpoint Epistemology: What is "Strong Objectivity"?' in L. Alcoff & E. Potter (Eds) Feminist Epistemologies . London : Routledge.

Hartsok, N. (1997) 'The feminist standpoint: Developing the ground for a specifically feminist historical materialism', in Kemp, S. and Squires, J. (Eds). Feminisms . Oxford : Oxford University Press.

McClimens, A. (2004) 'What difference does it make who is speaking?', Journal of Learning Disabilities, 8, 1, p.71-88.

Mort, M., Harrison, J. and Wistow, G. (1996) The user card: Picking through the organisational undergrowth in health and social care, Contemporary Political Studies , 2, p.1133-1140.

Radford, J. (1994) 'Intellectual Disability and the Heritage of Modernity', in Rioux, M. and Bach, M. (Eds) Disability Is Not Measles: New research paradigms in disability , North York , Ontario : Roeher Institute.

Townsley, R. Rodgers, R. and Folkes, L. (2003) 'Getting Informed: Researching the Production of Accessible Information for People with Learning Disabilities, Journal of Integrated Care, 11, 3, p.39-43.

Truman, C. and Raine, P. (2002) 'Experience and meaning of user involvement: Some explorations from a community mental health project', Health and Social Care in the Community, 10, 3, p.136-143.

Williams, M. and May, T. (1996) Introduction to the Philosophy of Social Research . London : Routledge.