Notes from the discussion session at #NAUWUYork on 26 May 2017
The #NAUWUYork event on 26th May finished with a roundtable discussion on what participants felt were the key priorities and areas of challenge relating to research involving participants who lack the capacity to consent. This discussion was not filmed, in order to enable open, relaxed discussion, but some general notes on the discussion are produced below.
If you have experience or thoughts on any of these points, and would be interested in writing a blog, or engaging in discussion, please feel free to contact Gill Loomes at firstname.lastname@example.org – The aim of this discussion and the notes here is to stimulate discussion and share information and resources.
- Difficulty of doing this research – very rare to find examples of people who are engaging in this research.
- When you are dealing with people who are service users, is easier to engage with those who do have capacity
- First question – especially given the arrangement of ethics forms – is whether people can “get around it”
- If you understand that MCA and what it says – then you can’t go wrong, but understanding it well is the difficulty!
- “I’ve been taught about the MCA through research not through practice”
- There are now a lot more accessible people talking about the MCA compared to what there was beforehand
- Literally a huge (ethics) panel!
- The need is to know the language of the MCA – particularly on the prevention of harm
- Ethics committee panel members should be convinced researchers know what they’re talking about – it is about issues of safety. Ethics committees need to be satisfied that researchers can effectively articulate the prevention of harm.
- The ethics process is very useful for problem solving. It asks the “what ifs”
- No methodology!
- No thoughts about interactions with the clients
- Ethics committees are not trying to trip you up, they want you to do the research – it’s about what have you got to offer, not to you, but to services users etc. The important people are them, not just the researcher.
- Changing social work culture/practice culture:
- Getting people to talk about and reflect on their practice – thoughts about how to frame consent.
Helping working across academic/practitioner settings:
- Should not apologize for doing qualitative research as practitioners, even if not within academic norms!
- When something is “academic” it has its own culture/status, problem of practitioners feeling like they are “inferior” even if they are not.
- The way forward – more hybrid researchers in academia. Academia not set up for people who have had past lives – had managerial experience, but not allowed to book a university room!
- Experience relegated to “practice” where academia values “theory’” – focus is on going off and reading some Foucault etc more than anything else
- Theory can emerge from data: that is the response – say, “well, I know what my theory will be when I analyse my data.” Not necessarily a need for a theory-first approach.
- Is that dichotomy based on academic status and the organization? Though key role of the academic “impact” framework means that hybrid/practitioners are potentially being involved more now – as better route for impact
- What counts as ‘research’ for practitioner-researchers or service users who are ‘immersed’ in the social world they research? Conversations with friends, tweets, interactions online – where is the line drawn? When does it become something that requires more ethical engagement? Can it put a barrier in the way? You are living in a research culture and everything you do is informing you – when you tweet, discuss over coffee breaks, engage as a service-user yourself, work as an advocate, and so on.
- Methods can help. So could reframe this issue and call it auto-ethnography? The problems comes, from an ethical perspective, when research is retrospective. Methods can clarify some of this – the literature on insider/outsider status.
Comments on the Court of Protection:
- In the Court of Protection – very open to having people going to see them. Is mental capacity in action!
- About the safeguarding issues etc – people have conversations in front of you. People (court users) forget you are there as researcher, people don’t notice you’re there – and people will chat about things – can you use it as data? It’s the “micro-ethics” of data collection. Small issues can lead to sizeable ethical problems
- As an example, putting up big posters saying research was going on was important in an ethics process -and suggested by a committee – is not necessarily workable in practice. In practice was not allowed to do so, as the research environment was patients’ ‘home’.
- Inherent power imbalance between researchers applying for ethics and the ethics committee – even if the former has sizeable practice experience.
Training on ethics:
- Does not touch properly on capacity. Want a space for researchers to go to – PhD or otherwise – where people can look at what works or look at how other people have got it to work. Academic supervisors not always able to help fully on that material. Additional, specialist resources seen as very important, and currently lacking.
- Discussing the MCA and the research values which are embedded in it are very important.
- Ethics has got better as a process – there are difficulties on projects which look to research ethics themselves.
- For training practitioners – the question here is what do they need to know? Training practitioners on the MCA is very important – you may be told by others that you are “wrong”? How do you best empower practitioners to engage with the MCA and to built on the NHS training and the (250 page long) MCA guidance. Very rarely applied – sometimes learn some theory or some words, but only some have the qualifications to do the capacity test.
- Takes time to figure out consent. The moment people are over the age of 16, the consent/assent debate comes into play. Tying to teach this is very difficult
- Engaging students in this can sometimes be quite difficult – rarely have time to engage with the deep methodological questions
- Questions students are asked don’t always get them excited about the issues – it’s more of a tick box to get them to go through the motions.
Ethics Applications – other issues:
- People do not always understand methodology – e.g. ethnography – they want to know your hypothesis! That’s not the point
- Consent is very difficult where there are so many gatekeepers. Often, they will tell you that a person/group of persons cannot give consent. The staff were told not to engage with those in seclusion, because that would encourage them to go into seclusion.
- There is the whole dynamic of the consultee in the MCA (s.32 MCA 2005). There are sizeable power dynamics within this set-up
- Raises questions about what is consultation? Needs stronger guidance. In theory, choosing any health protection would satisfy the MCA.
- People who do non-instructive advocacy face these issues all the time – this could inform the section of guidance on the MCA on nominated consultee – there are practices around advocacy which can deal with it in these ways.
- Fluctuating capacity is a huge part of this too. If people lose or gain capacity for people to give consent – checking that people are still engaging with the research, the participant does not think that the researcher is not “hanging around” with them day-to-day but is in a research setting.