Transcript: Importance of ethics in social care research and six principles for ethical research

Podcast Episode: Importance of ethics in social care research and six principles for ethical research

What follows is a transcription of the audio recording. Due to differences between spoken and written English, the transcript may contain quirks of grammar and syntax.

AP - Alison Petch

An event entitled ‘Navigating ethical approval and access in social care research’, was held on the 28th of January 2014. It provided an opportunity to discuss the routes for gaining ethical approval for social care research and to provide a platform for the launch of the guidance document developed by a working group led by Scottish Government. In this episode, Alison Petch, Director at Iriss, speaks about the importance of ethics in social care research and the six key principles for ethical research.

AP Why can’t we just get on and do it? Why do we have to bother about this whole question of ethics? And if you put a raft of researchers, I was trying to think yesterday of a sort of suitable collective term for researchers, but as soon as you get a room full of researchers, the tales of woe about trying to get ethical approval for the study that you absolutely felt was critical will come pouring out. And just from my own life, two thirds of it which was spent doing research, two immediately spring to mind. One was the study we were doing looking at multi disciplinary interprofessional working around palliative care in the community. All the different people that might support an individual with lung cancer as they were dying, we wanted to find out to what extent there was collaboration and cooperation across these groups. And quite rightly we had to present our study to an ethics committee, but actually all they were worried about was what would we do if someone started crying? These were people that we were going to see on at least three occasions hopefully, over the last eight, nine months of their life, and to be honest, our sort of flippant response was, ‘well we’d give them a tissue’, and what I really wanted to do when we did successfully navigate that process was to back to the ethics committee and tell them the story of one of the people we’d interviewed who had put it in a nutshell for me, he said “I have these eight professionals visiting me, each dealing with an aspect of my life but the researcher, the neutral researcher was the only person that I could really explain what I really felt”. And that to me may not be a very good story and people may want to challenge aspects of it, but I think the feeling is that very often we can get bogged down in the minushy without realising the sort of more critical issues. And then my other story is a piece of research where someone was looking at the experience, the lifestyles, the wellbeing of a small number of people with very complex learning and physical disabilities. Many without speech, people who used a whole variety of means to communicate, and she had decided that in order, and some people will be able to identify this piece of research, she had decided that the most ethical approach was to really get to know these people over five or six visits, to be with them, to spend time with them, to share aspects of their life, obviously negotiated through whatever means, depending on whether they had capacity or not. But back came the response from the ethical committee in the first instance that this amounted to an invasive procedure, now invasive procedures, I suspect, are a relic or not a relic, but they are associated with medical research when we are talking about injecting people with things or restricting movement or whatever. I really don’t think it was meant to apply to that situation, which seemed to me, as a purely lay person, to be a very ethical way of approaching that piece of work.

So it can be very easy to see ethics as a hindrance, as an unnecessary hurdle. But we want to take a much more positive attitude and look at why it is indeed very important that we have ethical procedures and ethical approaches in place.

To do effective research and to continue to do effective research we need public confidence, we have to have the confidence of people that this is for the greater public good, that there really is a valid reason behind what is being proposed and that it’s going to proceed without harm to individuals. If we want to define what we are trying to do when we discuss research ethics, ethics are principles that we use to make decisions about what is acceptable practice in any research project. At its most basic, we obviously don’t want people inventing data or falsifying results, some of you in the room may be familiar with Cyril Bert and Intelligence and the faked results that lay behind all that. So obviously we have to have a system that is going to ensure that such negatives are never encountered. But it’s not just about the negatives, it’s about trying to ensure that research is a quality product, it isn’t just something dabbled in by people who may be sort of not really sufficiently skilled at that stage to actually engage with it. It’s got to be done with thought, with respect, with a genuine concern at the end of the day, as Alan was highlighting, for the outcomes, the difference it will make to individuals.

So what I want to do is just elaborate a little on what are often considered the six key principles of ethical research, and the first of those is about integrity, quality, transparency. I think, and again this is drawing on my own experience of doing research, we have a duty only to do research when we believe that it has a valid purpose. We need to have fully thought out the questions we want to answer and to satisfy people that the data, for example, that we propose to collect will actually help to answer those questions. If you embark on a piece of work with a very woolly, fuzzy notion of what you are trying to do, there is a real danger that it becomes one of these graveyard pieces of research that actually doesn’t advance the knowledge that you had hoped it would. And that’s not an argument against doing very exploratory type research, it’s just an argument for clarity in what it is that you are trying to do. I certainly in the past have been very aware that certainly in the days when everything that moved had to be evaluated, there would be surveys galore, great piles of completed forms, that very often lay in the boots of cars, unanalysed, and people hadn’t really … there had been that enthusiasm, ‘we better do a survey’, but really they then found that the questions weren’t quite what they needed to know and so on, so I think for me there is a real argument around economy, efficiency, effectiveness, making sure that the research we do embark on is of a quality type. And part of that, I think, is because perhaps quite reasonably, the general population may be quite wary of research and how often have we heard of different groups of people, informal carers are a very good example, saying ‘well you know, I have answered these questions in so many different pieces of research over the years, but has it really made a difference at the end of the day?’ And perhaps I would, wouldn’t I, coming from an organisation like Iriss, but I think we need to be absolutely committed to the doing at the end of the activity and not to forget about the dissemination that we promised, so faithfully in the initial proposal. An issue about being open, about what it is we are trying to do. When I was doing a bit of background for today, it was interesting to find in some of my ancient textbooks, apparently in the 1930’s, it was considered, don’t worry, I don’t go back that far, it was considered perfectly okay to research student conversations in their sort of residential dormitories by hiding under the beds, and actually likewise, more recently, when I did my social work course, there was a story of someone who had been covertly researching in a prison, they had enrolled as a member of staff but actually they were a covert researcher and they used to tell the story of how they used to go off to the loo periodically, in fact they began to sort of almost wonder if they ought to have a cover as to why they went to the loo so often to write up their notes on the latest piece of wisdom that they’d observed.

These days a lot of that would be considered unethical. We expect transparency, we expect full disclosure. Although there may be times when you may be interested in a particular aspect of behaviour and the sort of … you know, it may be shaped as a more general sort of framing, but on the whole, we expect people who are being asked to participate to be fully informed, to know about what it is you intend to do, how it will be used, what the participation entails and what risks, if any, are involved. Again, people may have aspects of that that they wish to debate, we may have some passionate advocates for covert research.

Again the issue of confidentiality and anonymity, probably don’t need to tell an audience like this, sensitive information may not have been shared within family groups or within friendship groups and almost without thinking, people can find themselves in situations where they are in possession of knowledge that they have to be very careful about how they use. And I think we have also got to get a bit real about the promises we make about confidentiality and anonymity. Again in social care fields, social work, we are often looking at perhaps small organisations or specific teams, and if you start reporting that the manager of this team or the specialist worker said this or did that, actually it’s not really anonymous for those who are involved in that team, and I think we need to be much more subtle about negotiating that, it may not need to have a promise of confidentiality around it if it’s a sort of team learning process, but we need to be more honest about what we are promising.

And likewise what people often talk about is ’elite research’, if one is going off to interview the current Minister for children and young people, it’s hardly going to be very confidential if you’re then writing about it afterwards. Although, and again, one often sort of picks up the nuggets from stories, there was some long running saga, I think in one of the mental health journals about a fairly senior mental health worker who thought their confidentiality had been blown by the report that was produced form the research that she had been involved in, she felt that the quotes that were used identified her. Now as someone reading it who had no idea about the background to this, that wasn’t my sense at all, and I couldn’t help thinking that by entering in this huge debate month after month in this journal and making the headlines about it, she had probably done more to uncover who she was and whatever the story was. So again, I think there’s an issue about proportionality, but more fundamentally about being absolutely certain about what it is that we are promising or not promising.

Again, the principle of voluntary participation, we hope that that would go without saying, we can have all sorts of debates about opportunities for payment and so on, and I think there in an argument that if people have given up their time, some sort of token of appreciation may well be in order, but I think again it’s the key as to how that is presented. If people receive this afterwards, not having expected it, that should be fine, it’s when there’s a sort of sense of £50 notes if you will fill the quota for my research numbers. However, I think it can also work the other way, again an example from the past, when I was interviewing lots of people who were moving out of long stay mental health provisions and seeing them over a number of times, and they were living in various supported housing situations, and one of them I went back for the second time and I was going to see, shall we call her Jane … and it was a split site, so there were two houses, one a few doors down the road, and I overhead the support worker ringing her up and saying “oh that researcher, Alison Petch, she’s here, but you won’t want to speak with her, Coronation Street is on in ten minutes”. So I thought, hmm, huh, and I didn’t get to see her. When I turned up six months later for the third interview, she said “I didn’t get interviewed last time, all my friends and colleagues did, but you didn’t”, so again we have the real issue of never mind navigating the ethics, once you have got the ethical approval, navigating the gatekeepers and not making assumptions about whether people … again, it’s about people being able to take their own decisions.

We are onto number five, the fifth principle … which is about avoidance of harm, and this of course touches on the absolutely key areas of informed consent, on capacity, and of course we have very good guidelines, well I think they are, again people may debate, but I think the Scottish legislation produces at least some clarity around consent and capacity, and also, as I touched on earlier, not collecting sensitive data without justification. However, proportionality rules again, I saw very recently an information sheet for a focus group to be held with older people, just a couple of hours talking to a group of people and first of all the document, in its draft form, was about ten pages long, so it was going to take you a good while to read it anyway, and then it had the phrase about … this is when confidentiality might be broken … ‘if we felt you may be at risk of harming yourself or someone else’ … now I think that would be entirely appropriate perhaps for a very detailed study of child production, a meeting with family members, but again purely a personal view, but in the context of speaking to a group of older people who actually met every week anyway, this seemed to me to raise more worries and more hairs about what this would be about, than to reassure. So I think sometimes we can get carried away by the forms, the processes, the rituals that have become attached to getting ethical approval when a healthy dose of common sense might not go amiss.

And then the final principle I want to highlight, and again I suspect like a lot of these events, we are talking to a room full of the people that already know all of these things, hopefully it’s about spreading the message to those who aren’t so familiar, we need to ensure that research is genuinely independent, at it’s most basic level it is actually research, it’s not SUGE-ing … selling under the guise of enquiry, the sorts of people that stop you in the street and start asking about your lifestyle, but really they are flogging you insurance or whatever, and again the issue that I flagged up earlier about not having undue influence. And again, at the sort of fairly superficial level it’s quite easy to flag up that principle, once you drive down a little, it can become a bit more complex and people can have more sort of a nuanced views on the extent to which an enquiry is genuinely independent. A lot of the work and activity in our field is about evaluation and the pressure often to evaluate to show that things are working, and it can be quite tricky to hold the line and give the uncomfortable results as well as the ones that commissioners may be wanting to hear. And I think the commissioning particularly in those sorts of situations is absolutely critical. As someone who has worked in a range of organisations that have done evaluations, the number of telephone calls that you have to field where …‘oh we are doing this new project and we have got this money and we need to evaluate it, so will you do the evaluation?’ And you have to talk people through the sort of, well we may or may not be happy to do it, we are certainly not willing to be a rubber stamp, but are you willing to hear that your project may not be working. And that, I think, can be quite a critical element.

So just to finish, I am going to tell you a final story. Martin O’Neil is a researcher at Cardiff University. He’s currently involved in the DEEP project in Wales, which is about developing evidence enriched practice, an acronym of which I am dead jealous. For his PHD, Martin observed the work of ambulance crews, indeed Martin used to be an ambulance driver. One day as he was observing a routine admission, he’d been out on a run with the ambulance crew, they’d arrived back at the hospital, they were admitting a routine admission, transferring the person from the stretcher to the trolley, the crew got an emergency call saying “a five hour old baby had stopped breathing”, and at that point, without thinking, Martin reverted to his former role, he helped transfer the patient they were admitting, he cleared people out as they ran to the ambulance, once they got to the house he took up the routine he knew, one person went into the baby, he stood by the door incase they needed to rush equipment in or rush the baby out, he reassured the grandparents, they got the baby breathing but it was still irregular and they decided to take the child to hospital. So I will let Martin finish the story. “When we arrived at the hospital, the baby and mother were taken into casualty. I sat in the back of the ambulance with the EMT, this is the Emergency Medical Technician, and talked about the incident. By this time I had my researchers hat back on and it was full of ethical and legal concerns. What if I had dropped the patient when transferring from the stretcher to the trolley? In gaining access, I had told nobody that I would be touching patients, as at that time it had not been my intention to do so. What if I had prepared a piece of equipment incorrectly en route to the call? When I worked in the ambulance service that was always a concern then, but now I didn’t work for the ambulance service and felt that I should not have been doing such things. What right did I have to be in these peoples homes observing them at times of intense emotion and grief? As far as the ambulance staff were concerned, I had their informed consent, but the patients had not invited me into their houses. What if the baby had stopped breathing in the back of the ambulance? I knew I would have got involved in the resuscitation if I felt I could have helped. I knew the ambulance crew would have expected me to and that if I had not, they would have been disgusted with me. But I was now supposed to be the researcher, I felt that I had no right to be attempting to resuscitate peoples babies, probably the most precious thing in their life. As I sat there in the back of the ambulance sharing these rantings with the EMT, he said something that made me put the whole thing of research ethics back into perspective, he said “we worked as a team and who gives a fuck as long as the baby is all right”. I realised then that that said it all. Whatever my roles or responsibilities as a researcher, these were secondary to my roles and responsibilities as a human being. If I could help, I had a duty to help regardless of any arguments concerning research ethics. The ethical issues in this situation were a lot deeper.’

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