August 27, 2022
Lynn shares a personal, reflective account about developing guidance to help researchers and those seeking ethical approval for university linked work.
We started a project recently to try and provide guidance to help researchers and those seeking ethical approval for university linked work to get more clarity on ethics and ethical behaviour and, when needed, move beyond “getting” research ethics approval towards behaving and thinking ethically in co-production, involvement and engagement. The work is ongoing, this blog is a personal, reflective account from me (Lynn Laidlaw) - I'm part of the project team working on this. The also team includes Helen (Craig), Jade (Davies) and Emeline (Han).
There is an often-used phrase that describes co production as a 'state of being, not a state of doing’. This came to mind when I thought about what to write in this blog. Should working in an ethical way be ‘a state of being’ when applied to co-production, involvement and engagement in research? Is the concentration currently only on the doing, the process of getting ethical approval? In attempting to answer these questions it's perhaps useful to define, what are research ethics?
The Health Research Authority (HRA), who run the ethics approval service for the NHS, state that:
“Research Ethics Committees protect the rights, safety, dignity and wellbeing of research participants and to facilitate and promote ethical research that is of potential benefit to participants, science and society.”
Internationally the Declaration of Helsinki, a set of ethical principles regarding human participation in health research, was developed in 1964, after atrocities were found to have been committed by medical researchers who used participants drawn from Nazi concentration camps against their will. It has been updated multiple times since then and has served as the standard, internationally, in medical research ethics. Countries across the world have utilised it in their laws that govern medical research.
This ethics project was born out of the fact that many researchers and professional services staff across UCL have been seeking clarity on the ethical dimensions of their work with people outside of academia, whether that is via co-production, involvement or engagement work. Anecdotally, there are many within UCL who have struggled to know if their public engagement or patient public involvement projects are ethically appropriate and operating with integrity, with or without formal ethics applications. There have also been cases where staff and partners have been frustrated to go through lengthy ethical processes, where other projects that appear similar have not had to because they are seen as public engagement or patient public involvement at UCL and thus do not require ethical approval. Adding to the challenge is that unlike the HRA guidance for NHS linked work, there is no nationally agreed guidance for University Research Ethics Committees (URECs). Every university will have a UREC, they manage applications for all types of research project including co-production, or involvement and engagement work. In large organisations such as UCL there are multiple URECs' who may take a different view on what requires research ethics approval. Helen, Jade, Emmeline and I have been having conversations with researchers, co-producers, patient public involvement leads, public contributors, UREC members and other people who work in research about research ethics and co-production/patient public involvement/public engagement. We hope to write up case studies and provide guidance informed by these conversations, although, what form that will take is still under discussion!
From a personal perspective I have been reflecting on my question, ‘are research ethics a state of being, as well as doing?’ It’s been fascinating talking to people about this issue and I am so grateful to those who have willingly given their time and insight to assist us. There are a few issues that have been highlighted multiple times, the conflation of co-production or patient public involvement with participation in research is one of them - as a co-producer and public contributor to research I don’t feel I need to be "protected". Are researchers taught how to fill out UREC application forms at the expense of conversations and discussion about what are research ethics and how do we behave ethically when co-producing with people? Do co-producers and public contributors have a role in the UREC application process? At the moment I would say that UREC applications are mainly done to us, not with us. Are researchers applying to URECs in order to “get” ethics just in case a research journal asks them when they publish their research? When we approach the research ethics process as a “nice to have” or on a “just in case” basis are we really being mindful about ethics or seeing it as a yet another box to tick, or obstacle to be overcome in the research process?
As a society we are rightly increasingly concerned with equality, inclusivity and diversity and how these issues affect research. Does the research ethics process pay attention to these issues at the moment, and should it? Is research that isn’t inclusive and diverse inherently unethical? There have been issues raised around involving “vulnerable” groups in co-production and patient public involvement - how do we guard against this becoming paternalistic while ensuring the rights of people are protected? How does the research ethics process reflect current societal values, and should it?
What has been apparent from the conversations we have had is that all the people who are part of the research process value advice, guidance and a place to go to discuss these issues about co-production in research and patient public involvement, even if research ethics approval isn’t required for patient public involvement or engagement work. The big question for me is, are these issues best discussed through the current UREC set up or do we need another forum for these, which involve everyone in the research process, including co-producers and public contributors to research? I hope that our project will answer some of these questions and beyond that start a wider dialogue about ethical issues in research which don’t just relate to research participation, I understand that this is a big ask.
I want to thank Co-Production Collective for the opportunity to be involved in the project, Helen, Jade and Emeline have been wonderful to work with and our differing perspectives have enriched the project, as well as causing me to reflect on my biases. Also, Jim Elliot, the Public Involvement lead at the HRA, who has been so generous in sharing his in-depth knowledge of research ethics with me. His recent tweet thread about research ethics is a must read to help understand the issues, also a great thread from Sarah Knowles with links to academic papers discussing wider ethical issues.
The work is funded by Co-Production Collective at UCL working in partnership with UCL’s Public Engagement team, part of UCL Engagement. If you would like to chat further about this subject, please feel free to contact us via email at coproduction@ucl.ac.uk.
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