Forms over function: Ethics, ethnography and the NHS
At times last year I forgot that I was doing a PhD. It’s not that I was having a wild time as a student. No, by 9am every day I turned up to the office my department has kindly provided, settled down at my desk and worked solidly until some point after 5pm. Some of that time I’d be keeping on top of email, or attending departmental meetings, but mostly, I was working. Twitter doesn’t distract me, I had an organised weekly list of things to do that I worked through, and things were progressing nicely, thank you.
So why did I forget that I was working towards a PhD? Because for most of that time everything I did was aimed at getting ethical approval for my research. So it was almost a shock to look up and remember that wasn’t really my goal. My goal is to do the PhD research, to contribute to human knowledge and understanding, and to do it in a way that improves people’s lives. For a while however, compiling what became 91 pages of ethics forms plus supporting documents and all the bureaucracy that goes with that completely eclipsed the research.
I always knew I’d need to get ethical approval for my work. What I didn’t appreciate was how time-consuming, frustrating and complicated this would be. I used to listen to other people’s stories of wrestling with UK’s Integrated Research Application System, or with the NHS Health Research Authority’s byzantine processes and think either that they were exaggerating for effect or that perhaps their project wasn’t, well, good enough. I’d had approval from the prison service for England and Wales for two previous research projects; how hard could it be? I now apologise whole-heartedly that these thoughts even crossed my mind.
I did make life harder for myself by wanting to research dying prisoners, thus requiring both health service and prison service approval, as well as that of my University. The prison service process was fairly straightforward and familiar. The real trouble was with the NHS processes, and with the relationship between the three bodies. What kept me going for several weeks, as I tried to untangle the mass of acronyms and synonyms involved, was the thought that I was gaining useful experience. At the end of all this, I thought, I’ll be able to put on my CV that I understand the process, know how to fill in the form and could liaise with a health Research Ethics Committee. Not true. The process is so capricious that all such an entry in my CV would prove is that I once had the mental fortitude to see an application through to its conclusion.
Although my colleagues will tell you I sighed out loud quite a bit, I did make it through the time when an overnight update to the IRAS website hived my answers off into two separate forms, one of which I couldn’t see. I didn’t scream when I discovered just before submission that this should be changed back to one form. I stayed cheerful as my participant information sheet, carefully written to suit people not that keen on reading, expanded to yet another page with all the extra information I was asked to include. I only muttered a modest amount when asked to add the (to the participants) totally meaningless IRAS reference number to it. I maintained my outward equilibrium whilst I confirmed I would not be doing things I’d never thought of (wearing clerical dress was my favourite such request, closely followed by audio-recording outside of interviews). But I confess my heart did sink when someone I was relying on to understand what should happen next said this would be a learning process for them too.
Being a reasonable person, I did appreciate that part of the difficulty was that I was having to fit getting approval for sociological research into a process intended for clinical trials. The mismatch only seems to be partly recognised by the bodies responsible. So, whilst there’s a protocol template to complete aimed at qualitative research, I still had to say I wasn’t using ionising radiation or using human tissue samples. And whilst there are ways to amend the project once it’s been approved, there’s no appreciation that good sociological research is often iterative. Instead, there’s the assumption that you will know all possible scenarios in advance. With this comes an assumed relationship to the research participants; they are to be the subjects, not the co-creators of research knowledge. There is no scope for an understanding of ethical research that deviates from a generic (clinical) ideal, and consequently, the best of a discipline’s specific characteristics and of its newer research methodologies can be lost. I say newer, but in practice even my well established chosen ethnographic methodologies sit uncomfortably with the process of getting ethical approval from a health research authority.
There was a tendency in the guidelines provided to use language in unexpected ways. Have you ever had that experience of all the words making sense individually, but being incomprehensible when put together? I found myself trying to draft emails to effectively ask “so if ‘host organisation’ doesn’t mean ‘the organisation hosting the research’, what does it mean?” I struggled, along with my supervisors, and it turned out, the ethics committee staff, to understand what the REC had wanted when it asked whether I had an ‘honorary contract’. Later on, the REC asked if the scientific validity of the study has been confirmed independently of the academic supervisors, giving as an example of how this might be achieved “a University PhD review process”. None of us, not my academic supervisors, not the university ‘sponsor’ that I’d discovered along the way was also needed, knew what this meant. We were stumped, and resorted to gently approaching a professor elsewhere to see if they could provide such an independent scientific review, and quickly. In the end, this was not needed –all that was meant was would the University’s ethics committee be looking at it. Yes, of course.
There were funny moments too. Having had my application reviewed by a Research Ethics Committee that met in Essex, I then discovered how similarly I pronounce ‘Ethics’ and ‘Essex’, on the phone, to a poor, kindly person trying to understand which ethics committee had looked at it. Eventually, I said, “the one that met in Chelmsford” and we moved on. Having three ethics committees look at your work is not fun. As things are, it’s inevitable for research such as this, but unsurprisingly their expectations are not always compatible. The prison service doesn’t want any contact details for external people, such as academic supervisors, included on Participant Information Sheets; the NHS expects this. The University wants email addresses only; prisoners don’t have email. The NHS REC regarded the notices that prison governors would issue to let prisoners and staff know about the research as ‘posters’ that the REC should scrutinise, so needed the final text agreeing before I could get their approval – 6 months in advance of the governor issuing the text. Prison governors are incredibly busy people, so I am indebted to them for having calmly accepted this.
There is, outwardly, plenty of advice available on NHS websites. Much of it is out of date, hard to find, or impossible to understand. There are flow charts describing a parallel world, ‘start here’ guides buried beyond discovery, and directories that are out of date. Lovely, kind and supportive staff within the NHS R&D offices or working with RECs do their best, but if your project is unusual, there are things they can’t be expected to know, such as that there’s a limited number of Health RECs who will look at prison applications, until it’s nearly too late.
I’m not alone in this. In my struggle to understand the process, I came across numerous articles by academics similarly venting their frustrations, including one that fairly calmly reflecting on the problems, before revealing that their own project had spent the entire initial research budget trying to get permissions for research. Wiser people before me have also found that processes designed for quantitative-based medical interventions and clinical trials cannot adjust to the needs of qualitative research. And yet not much seems to have changed. My gripes may seem small, but behind them is a bigger issue, that of the imbalance of power between researchers and research ethics committees and the lack of accountability of the people, some experts, some lay people, appointed to make such important decisions.
So now I have all the ethical approvals I need, 10 months after I first starting filling in the forms, I’m remembering fondly why I’m here. It comes in flashes; the possibility of time to open that new book I’ve been eyeing up, something on the news that reminds me of the relevance of my research interests, a chance conversation with a colleague. Best of all was a recent conversation with a senior manager at one of the prisons I’ll be visiting for fieldwork. We’d not spoken before, but within minutes she’d reminded me why I’m doing this, why it matters that I’ve survived through all these hurdles. Out there are people who are doing their best in tough circumstances, and good quality research may just be able to help them. I’m looking forward to getting on with it.