‘Never doubt that a small group of thoughtful, committed, citizens can change the world!’
Through Think Ethics we are exploring ways to make ethics review more innovative, efficient and trusted. We want to put participants and ethics at the heart of health and social care research. Working with our partners across the UK and stakeholders from the research community we are formulating options for improvement.
As part of this work we wanted to hear from members of the public, to find out what they think is important in ethics review and who they trust to provide that review. We also wanted to give members of the public the opportunity to suggest their own ideas for what could change and why.
Working with a specialist social research agency, we recruited 46 members of the public from across the UK to take part in four workshops which took place via Zoom in January.
Attendees heard from a range of speakers including Research Ethics Committee members, public contributors, researchers, ethicists and HRA staff to give them an understanding of research ethics principles and processes. They worked in small groups and discussed what is important to them about research ethics, what builds trust and what opportunities there are for improvement in the current system.
We worked with an Advisory Group, including members of our Public Involvement Network, to shape the public dialogue exercise. Three of our members have been involved in the group. Here, all three of them, tell us what they hoped we would get out of the dialogue exercise and what they took away from observing some of the process.
Louise Vale – public contributor and member of the HRA’s Public Involvement NetworkLouise Vale – public contributor and member of the HRA’s Public Involvement Network
As a public contributor involved in patient research for over 10 years, I jumped at the chance to get involved in planning these workshops.
I’ve often been faced with ethical issues in research and think public involvement has an important role in this area. This is the second project I’ve been involved in at the HRA.
The public contributors on the Advisory Group have been keen to ensure diversity and equal access on the project, so the UK population was fairly represented. In planning the workshops, we said we wanted to see good representation among the speakers too, and our suggestions were taken on board.
One of the first things that struck me was the number of men that attended the workshops. I’m not used to seeing so many men at meetings like these – usually women are more likely to come forward to talk about health issues. That’s credit to the facilitators who clearly succeeded in making sure we had the right mix of people in the room.
In fact, I thought the participants were a very good cross-section of people. It’s helpful to have this as a reminder that if we want to have a representative cross-section of the population, we need to invite a representative group, not just send out a general invitation and accept whoever comes.
Given that many of the participants were new to this area, I was surprised and impressed by how quickly and readily they got to grips with ethical questions in research - they clearly had good antennae for what’s ethical and what’s not.
They were enthusiastic and posed many searching questions. Some questions were magnificent!
One of the participants made an excellent suggestion, that public involvement in ethics committees should be like jury service. Letters would be sent out to a representative sample and if you were selected, you would have to do it and you would be paid. This would get over a lot of the difficulties of recruiting from certain demographic groups.
What was important was that members of the public were bringing their humanity to the discussion, and particularly their empathy and emotional intelligence. They were certainly confident in putting forward their ideas and ethical concerns.
The session was very inspiring, reassuring and definitely an important step in the right direction. I’m looking forward to the next steps.’
Lynn Laidlaw – Chair of the Public Dialogue Advisory GroupLynn Laidlaw – Chair of the Public Dialogue Advisory Group
‘Observing the workshops as Chair of the Public Dialogue Advisory Group was interesting for me as I had this overwhelming urge to dive in. Anyone who knows me, knows I have a lot to say on this subject! However, I had to remind myself that on this occasion, I was there as an observer, my job was to listen. So, I did, intently, to a range of perspectives, views, opinions, and ideas.
There was rich dialogue from a diverse group of people, who all shared a common goal, to help shape and inform patient research - to be part of the step change taking place in health and social care research.
I was delighted to see such a wide range of people in the room as previously where public engagement and involvement is concerned, there has often been a distinct absence of marginalised communities.
If members of the public are to play a pivotal role in health and social care research and we are serious about it, then groups like this need to be reflective of the society we live in - how can research be ethical if it’s not diverse? Research affects us all and for it to be truly impactful it must be truly representative.
Diverse perspectives are essential as is lived experience. As many will know, I have experience of living with diseases and participating in research and to see this reflected in the make-up of the group was truly heartening.
Being completely honest, at times I found the conversations in the public dialogue groups challenging, uncomfortable even, but If we don’t feel uncomfortable, nothing will change. There were certainly some tensions, but I’d like to refer to them as “productive tensions”. Ultimately, we need to have these forums, to enable research to evolve.
Overall, I thought it was a great opportunity to access a platform for those previously underrepresented, to have a seat at the table, a voice to affect change, influence, and shape. Research affects us all and we can all play a part.’
Della Ogunleye - public contributor and member of the HRA’s Public Involvement NetworkDella Ogunleye - public contributor and member of the HRA’s Public Involvement Network
All voices need to be heard; it can’t be a ‘once size’ fits all approach.
People feel empowered when they see faces that look like theirs in situations like these and that in turn generates confidence and leads to rich conversation/content. The agency facilitating the sessions certainly knew how to pick an audience - it was one of the first things I noticed. They got it just right with the cross section of people in the groups.
I found this particularly encouraging because I feel it’s imperative to make sure we have the right mix of people in these groups to truly inform and impact research and clinical trials.
On the other hand, seeing these participants who’d been specifically selected for the purposes of this exercise did make me think: ‘How would they know about it otherwise?’.
What other forms of engagement are taking place to target unpresented groups and communities?What other channels exist to empower members of the public to engage in these discussions? Is the HRA doing enough? And for anyone with an interest in this area, can they come directly to the HRA and if so, how?
I was really impressed with the contribution of every participant taking part in the groups. There was a tangible sense of passion, and a real willingness to contribute emerging from the sessions as well as lots of probing questions.Overall, I was happy with the sessions - a positive step in the right direction.
However, I’m realistic enough to know that change won’t happen overnight, after all, ‘Rome wasn’t built in a day’. Ultimately, what will be a marker of success from this journey the HRA has embarked on?A suggestion might be to consider producing an impact report a year from now to see just have far things have come – the proof of the pudding is most certainly in the eating.