Involving Service User Voices in Maternity Research and Clinical Development

This is an edited version of an invited talk given by Jo Dagustun, AIMS Campaigns Team, to the International Labour and Birth Research Conference UK, 24 - 26 April 2023.

Good morning. During our plenary discussions yesterday, my service user colleague, Michelle Quashie, introduced the crucial notion: “nothing about us, without us”. I think that usefully introduces a number of interesting questions, which fit well with the title I have been asked to speak to. Let’s see.

So question number one: How do we know as a society what we need public services to look like?
The assumption is that public services are improved when the public are involved in their commissioning, design and ongoing evaluation, both at the national and local policy level. And what good looks like can be informed by research.

Question two. How do we know what research questions we need to ask, and how best to conduct and communicate that research?
Assumption: research aimed at improving public services is improved when the public is involved in its commissioning, design and, once the results are in, efforts to communicate our learning.

Linking both of these two elements together, we might then ask question three: How do we ensure that evidence, that's been costly to develop, is implemented to offer high quality evidence based services, services which are then most likely to be effective?
Here we might make the assumption that service users, the consumers of those services who have the most ‘skin in the game’ - the biggest personal investment in high quality public services- are well placed to help us mobilise our evidence and to ensure that it informs practice.

So. I've highlighted so far the role for the public in - or public involvement in - public service policy discussions, whether national or local. And the role for the public in - or public involvement in - research. And, when it comes to research that might help us improve our public services, I've also highlighted the role for public involvement in knowledge mobilisation. Because the public isn't funding researchers to ensure that those drawn to doing research have an enjoyable and intellectually stimulating life for which they get paid. We're funding it, from the taxes we pay, in the hope that it will make a positive difference to how our public services perform. And how we experience them.

So there’s lots to think about there, in terms of the practicalities of involving the public in this way - of the many different ways we might involve the public - tailored to the specific public service research project or evidence implementation journey. But what's that got to do with this conference?

As someone who has been attending this conference off and on since around 2009, I am interested in the question of whether there is a place at such an academic conference for the service user - for service user involvement - in academic conferences.

And in a sense, although one could construct a list of pros and cons of service user involvement; and one could start to consider the aims and objectives of such public involvement; and start to develop a mechanism or design for such involvement to ensure that it is as effective as possible, I guess my key message is this:

• The power is not really in our hands. It is not just for us to think about whether or not we want public involvement. Because we have got it.

The public is involved when it engages with our conference series, as it has done quite intentionally, at least in the UK. As a conference, we are on the public’s radar, and as such we no longer have first mover advantage. As a conference, we are positioned already with regard to public involvement. The question is, whether and how we might want to modify our positioning.

So we’re talking here about a number of issues. Public engagement: yes, we’ve got it. Public trust? I’m not so sure. Public appreciation: again, I’m not sure we could claim that. Public involvement: I’ve certainly seen that develop over the last 14 years.

And this fits, of course, into a bigger conversation - as we discussed yesterday - about the possibility of further reflection on the scope of the conference:

• Why are we here? Why are you here?

• What is the purpose of this conference, of an academic research conference?

• Linked to this and to our purpose, who is here? Who isn't here? Are the right people here?; and

• How are we intentionally designing our conference for maximum effectiveness as measured against our collective objectives?

So, there’s lots to reflect on in terms of just what we're about at this conference and how we might want to see the conference series developed.

Within that, in terms of service user involvement, there's also plenty to discuss. I’ll offer five conversation starters:

• First, thinking about beyond the conference hall and the issue of public trust, is there a case for supporting better public understanding of the conference to demystify it and to explain what we are about?

• Second, as the conference is prepared, there's a question of the public representative on the Steering Group. We need to think further about the role of this postholder - what is the role exactly - and how should the role be remunerated and recruited to? Does the postholder need to draw on the views of a diverse public panel to guide their input?

• Third, at the conference itself, what happens when the public stakeholders and consumer organisations are part of conference discussions? How might we best organise having more of them with us, if we want them here to bear witness to, and contribute to, our proceedings? Should we be opening up some of our sessions to the public, free of charge, and also consider placing some conference activities in everyday spaces local to the conference to allow for public engagement that way?

• Fourth, coming back to what happens beyond the conference space, what news, for public consumption, should come out of our conference? What is our collective public engagement strategy and impact?

But we can’t look at this without also thinking about our constituent parts, in terms of each individual research project presented at the conference. Here. I’d ask:

• What do we collectively know about service user involvement in individual projects presented?

• Do we need to know more?

• To what extent do or should abstracts offer information on this?

• How do conference presentations address the issue of public involvement in research?

For without this knowledge, we cannot claim much insight at all into the public involvement in, or acceptability of, our conference content. Of course, there is a balance to be struck here: to what extent are such questions strictly for individual research project teams, and what interest should conference itself have?

Coming to a close, what I’ve been talking about today is innovation in conference design, with a particular focus on the public. I’m sure that there are plenty of excellent ideas on this around the room, but to squeeze a couple more in, should there be a first day breakfast session for conference newbies, to welcome and orientate them? Should we hold a debate in a local pub, as the Political Studies Association has done? Could we have an open screening of a documentary, followed by a discussion led by academics?

So to conclude:

• Let me thank the conference organisers for the care that they have put into organising this excellent conference. I for one look forward to each one I am fortunate enough to be able to attend, and I look forward to the conference series going from strength to strength. Service users need you to carry on sharing your research about the physiology of labour, birth and the early postnatal period. Without your work, our need for physiology-informed maternity services will remain unmet.

• As in all areas of academic work, let’s draw on the literature around academic conference design to help us as we move forward.

• And finally, let’s be careful what we wish for. At the core of this conference is birth, and the midwifery and maternity services that support it, where relationships are crucial and where small can be the most beautiful. Let's keep working to ensure our conference remains humanised, and think about how service user involvement is a vital element that will help us strengthen our work together.

Thank you.

Talk given by Jo Dagustun, AIMS Campaigns Team, to the International Labour and Birth Research Conference UK, 24 - 26 April 2023

Report on the Conference by AIMS Campaign Team member, Charlotte Eden can be found here

Editor Comment: We would be interested to hear your thoughts about the value of having service users attend or speak at conferences such as this. What do service users gain and how can they use what they learned in their own communities? What new ideas or perspectives might they bring from their lived experience that would be beneficial for the academic and professional delegates to hear?

AIMS would like to see the organisers of this and other conferences thinking about what they could do to break down the silos between service users, researchers and professionals. Would the style of conference presentations need to change to make them accessible to a wider audience? How could discussion and shared learning amongst different types of delegate be encouraged, for example through suitably facilitated workshops?

If you have views on any of these points or other suggestions to make please get in touch with us campaigns@aims.org.uk