‘R’ is for ‘Research’ – Introducing a new online resource for mental capacity and research participation
Gillian Loomes – Department of Sociology, University of York (From 1st October: University of Leeds Law School)
Nothing About Us Without Us York: A Symposium on Mental Capacity and Research Participation – University of York, 26th May 2017
As we know, Wednesday 27th September 2017 is the 10th Birthday of the Mental Capacity Act (the ‘MCA’), coinciding with the annual Adult Principle Social Worker Network MCA Call to Action. I’m sure we all remember last year’s focus on #unwisedecision, with social care practitioners decorating offices and taking to Twitter to share their ‘unwise decisions’, as a reminder of that key principle of the MCA – that making a decision considered by others as ‘unwise’ is not the same as lacking the mental capacity to make that decision.
This year, the focus of the day and its build-up has been the ‘A-Z of the MCA’, including the posters, postcards and easy read books being distributed among Principle Social Workers, proclaiming, among other things, that ‘H is for Happiness.’ It may not be surprising, or indeed particularly original, that as a PhD researcher I suggest ‘R’ is for ‘Research’, but in this blog I would like to draw on my research and related work on the socio-legal study of the MCA and disability politics, to explain how ‘R is for Research’ in the context of the MCA – why this matters, how it impacts on those of us whose lives are touched by the MCA (as academic researchers, practitioners and/or (self) advocates) – and to introduce a new online resource engaging with issues and debates on the theme of mental capacity and research participation.
The MCA and Research Participation
The MCA and the Code of Practice have specific things to say about research participation by those lacking or losing the capacity to provide consent. Contained within sections 30-34, the Act sets out the requirements for approval of ‘intrusive’ research involving those lacking capacity to consent. It includes a requirement that the research must be connected with the ‘impairing condition’ that causes or contributes to the prospective participant’s ‘impairment of, or disturbance in the functioning of, the mind or brain’, it sets out a role for family members, or other appropriate (unpaid) persons concerned with the individual’s welfare, to act as ‘consultee’ in providing advice as to whether the individual should participate in the research, and what, in their opinion, the individual’s wishes and feelings would be regarding the research and participation in it, and it also makes provision for circumstances where a previously capacitous individual loses capacity to provide consent part-way through participation in research (e.g. in the context of longitudinal research.)
The Code of Practice also sets out a commitment to participation in research by adults lacking the capacity to provide consent, emphasizing the potential benefits to individuals themselves when, for example in the context of an interview, they have the opportunity to share aspects of their ‘story’ and express their views and perspectives, and stating:
“It is important that research involving people who lack capacity can be carried out, and that it is carried out properly. Without it, we would not improve our knowledge of what causes a person to lack or lose capacity, and the diagnosis, treatment, care and needs of people who lack capacity.”
You can read Dr Julie Latchem’s experience of navigating the provisions of the MCA 2005 while carrying out her ethnographic research in a neurological rehabilitation unit here in an open access Special Issue of the York Policy Review on Mental Capacity.
Why does this matter?
Given the vast array of burning issues arising for clinical and social care practice out of the provisions of the MCA, it may seem that participation in research is perhaps a rather ‘niche’ one with which to be concerned. Here though, I’m going to set out some of the reasons why the rights of people lacking capacity to consent to participate in research (and their right to be protected from exploitation when doing so) are of key importance.
The right to be represented in research has long been a key concern of disability politics, and of activists concerned with the advancement of disability rights – and the risks associated with the exclusion of disabled people from research, particularly the silencing of disabled ‘voices’ have been articulated at length, (Oliver, 1993; Nind and Searle, 2009) especially with regard to people with cognitive and speech impairments (Nind, 2001). Such issues resonate closely with my own experiences and concerns as a disabled researcher-activist. I have an autism spectrum diagnosis, and have experience of reading about an aspect of my identity in research literature – including the experience of how ‘othering’ this can feel, when clinical, deficit-based language is used to describe these aspects of identity. I also have personal experience of being a participant in autism-related research and have felt the very benefits in terms of ‘voice’ expressed in the MCA Code of Practice. It is part of my autism politics to contribute to such research, as a way of shaping our community and impacting on the world around me.
Furthermore, when working as a specialist autism advocate, I am aware of the use of research in securing socio-political change for autistic people on an individual, and a community level. Such a model of research and practice interacting in a symbiotic relationship is entrenched in professional development university courses, such as those offered by the Autism Centre for Education and Research (ACER), based in the School of Education, University of Birmingham, and is a central element of the work of the Participatory Autism Research Collective (PARC) – which you can learn more about here
Research happens, and research matters. It is my contention here that if we are serious about advocating for those with disabilities to have a ‘voice’ in society, including such disabilities that necessarily impact on an individual’s mental capacity, this advocacy must very certainly include advocating for the representation of these individuals and groups in research and their right to participate meaningfully in such research,. To quote the phrase – ‘you have to be in it to win it’. This does not mean, however, that I am ignorant of the need to ensure the protection of people participating in research, and the ethical, legal and methodological implications of such research. It is to this end that I have worked alongside completing my PhD to establish a platform for dialogue, skills development, and engagement around the issues of mental capacity and research participation. I would like to tell you about this platform, and encourage you to get involved!
#NAUWUYork and the new ‘MCAR’ Resource
Elaine James of Bradford Council presenting practice-based research on the Mental Capacity Act 2005 and the voting rights of adults with learning disabilities.
On 26th May 2017, the University of York Law School played host to a symposium exploring the issues around mental capacity and research participation. The event was called “Nothing About Us Without Us: Exploring the ethical and methodological issues in researching with, and working co-productively with people whose disability/illness means they lack the capacity to ‘consent’.” and was covered on Twitter, using the hashtag #NAUWUYork. It brought together academics, practitioners and disabled (self) advocates to share perspectives and experiences on research, with a significant theme of discussion during the event being the need for resources and support for academic and practitioner-researchers undertaking research with adults lacking the capacity to consent.
You can see a Storify of a range of tweets from the event here.
Following this event, my colleague, Jed Meers (University of York Law School) and I have put together a web resource collating outputs from the symposium (including videos of each of the talks presented on the day, and interviews with participants), and serving as a platform for blogs and other forms of engagement – raising awareness of the issues and developments in this area of academic and/or practitioner research. This is an emerging and growing resource, and will include perspective articles considering issues in practice, and accessible summaries of other published research and resources on the subject. It is my sincere hope that the resource will enable engagement among academics and practitioners, along with disabled people and other stakeholders with views and experiences in this area of research.
You can view the website and access the video footage of the talks and interviews at www.mcar.org.uk
If you have questions or comments on the subject of mental capacity and research participation, and/or if you are interested in sharing your own work or writing for the blog, please get in touch via firstname.lastname@example.org.