Choice, voice and change: developing networks for the involvement of people from seldom heard communities in England, Ireland and Scotland

Lead Research Organisation: University of Aberdeen
Department Name: Sch of Medicine, Medical Sci & Nutrition

Abstract

User involvement in research is increasingly recognised as an important way of ensuring research reflects the needs and preferences of those whose lives are affected. However, it is often done in a tokenistic way and ignores the voices of many marginalised and 'seldom-heard' groups, such as people with learning disabilities or dementia, and other people who do not find it easy to get involved in traditional ways of discussing research.
We use the term 'seldom heard' as a commonly recognised term to describe this issue. We recognise, however, that other terms such as 'seldom involved' or 'seldom listened to' might better reflect the experience of marginalisation. We recognise that it is researchers who need to change the way they think and do things, to make sure their research is inclusive.
The Choice, Voice and Change Network aims to advance social science theory and practice in this area. We will do this by bringing together a range of experts based in England, Ireland and Scotland from within academia, the third sector and, crucially, those with lived experience. Individually and in collaboration, these experts have track records of working in partnership in research, particularly with people with learning difficulties and people living with dementia.
The funding will be used for three 2-day workshops to bring together key research stakeholders (academics, people with lived experience of dementia and/or learning disability and the third sector) from the three countries in order to share and combine knowledge, and create a sustainable, collaborative network. The network will support stakeholders to critique current forms of user involvement and develop creative approaches to engaging and researching in meaningful and inclusive collaborations with marginalised and ignored groups. The outcomes of these activities will include innovative principles and guidance aimed at researchers, policy makers and research funders to support inclusive research practice. This will be achieved by running the following workshops themed on Choice, Voice and Change, in Oxford, Dublin and Inverness respectively:
Workshops 1+2:
Day 1: Academic network members meet with local people from seldom heard communities and advocacy groups in a World Café format ,and work together to unpick the concepts of 'choice', 'voice', 'seldom-heard', 'inclusion' and 'participation' using a variety of creative methods.
Day 2: Academic network members meet and reflect on the insights and learning. Issues raised by participants and materials produced on Day 1 will help us describe difficult problems we need to address and statements of ideas about how we might begin to tackle them to feed into Workshop 3
Workshop 3:
Day 1: Academic network members work on the problems and ideas from workshops 1+2 to design a series of possible innovations and research principles to support behaviour change in research practice involving marginalised and ignored communities.
Day 2: The final day will be a World café format in which the proposed innovations and research principles developed the previous day will be presented to local people from seldom heard communities and advocacy groups, research funders, and representatives from university research offices for discussion and to decide which ideas to take forward.
Outcomes
The network will challenge researchers (including ourselves) and funders to rethink assumptions about how to engage in respectful, meaningful and collaborative research with people from seldom-heard groups. The development of improved processes and principles in this area will support the production of more innovative and effective interventions that disrupt the usual top-down approaches and deliver greater return on investment economically and socially.
Planned outputs include contributions to the academic literature, a future research application to test the principles, educational resources and guidance, and policy briefs for funders.
 
Description Health research funders and ethics committees now routinely expect patient and public involvement (PPI) in applications for health and social care research. While there has been a considerable shift over the last decade from tokenistic to more meaningful PPI in many regards, it is recognised that this is still not always done well and that some groups of people are less likely to be involved than others. It is increasingly recognised that the onus is on researchers to be more inclusive in their involvement practices.

As a network we spent time early in the award sharing our experiences of involving people from seldom heard groups in research, including interrogating what we mean by 'seldom heard' and the power relationships, practices and language which shape and constrain PPI in health research. Members of the network have particular interests in the involvement of people with various forms of cognitive impairment, especially forms of dementia and learning disability, and this was therefore our primary focus. We identified PPI in the pre-award and grant set-up phases of research as a neglected area - including establishing research priorities with people, involving them in the design of research and the funding application, and overcoming bureaucratic and ethical hurdles to becoming co-investigators or research partners.

A fundamental problem identified by the network is the inherently wordy culture of research and research processes. So much of what we do relies on words, both written and spoken: application forms, research plans, surveys, complex terminology, meetings, agendas, minutes, registering accounts with online application systems, contracts and signatures, to name but a few. This can be daunting at the best of times for PPI partners, but the privileging of articulacy and cognition it represents may almost by definition exclude some people who live with cognitive impairments. As an example, a written lay summary will not make any difference to someone who cannot read.

Our plans for whole-network face-to-face meetings with people with learning disabilities and dementia were not feasible as a result of COVID (see below on why our objectives were only partially met). Instead, members of the network held separate smaller meetings, either online or face-to-face, and fed these back to the network. In the UK, these included three meetings with co-researchers and PPI advisers with learning disabilities (and a supporter of one person) from two other NIHR-funded research projects (Flourishing Lives and Growing Old with Learning Disabilities). The co-researchers have very much enjoyed taking part in ethnography where they can watch and ask questions and then take part in discussion of what they have observed, although the bureaucratic hurdles involved in setting them up as co-researchers have been substantial. However, they talked about how they sometimes found it hard to contribute during online research team meetings and often the talk is not straightforward to follow. They all prefer Zoom and did not like it that some meetings are on Teams (which some universities require for data protection reasons). Several talked about growing in confidence to be able to ask people to slow down in meetings or say things in a way they can understand. (The supporter also talked about the trickiness of supporting someone to take part in a project virtually as they weren't sitting together. It could feel quite contrived if she spoke across the meeting to try and help the person she supports to contribute whereas in face-to-face meetings she can be more subtle).

They all liked to have easy read slides in virtual meetings as it can be easier to follow the discussion. (The PPI coordinator on both projects has introduced placement slides to orientate people to the point of the project, the project month out of the total project length to let people know how far we are in the project and meeting notes are audio recorded so those who find reading difficult can listen instead. She has also meticulously halted the meeting to make sure everyone understands the discussion). People felt online meetings can be very tiring, particularly when you look at the screen for 1-2 hours, and preferred smaller online meetings as it iseasier to contribute. They all prefer face to face meetings as it is more personal.

These discussions led one network member to reflect - despite best intentions 'how exclusionary a lot of our early project meetings were - the tension between getting the project up and running, time constraints (and fears!) and losing sight of what it is like to sit there on your own and try to follow complex discussion in a group of strangers.'

We suggest our current wordy research culture and PPI practices may represent a form of 'bureaucratic violence', systematically excluding people and downplaying their forms of knowing, despite the best intentions of individual researchers. Creating meaningful, authentic partnerships with people living with cognitive impairment may require a sea-change in what we think 'good PPI' looks like, and substantial change in both current research application processes and in the allocation of costings to support the additional time, flexibility and development of accessible materials required.

These network deliberations have led to the publication of a Viewpoint debate article to Health Expectations, which also formed the basis for a workshop with senior funder representatives to discuss practical solutions (see engagement).
Exploitation Route The potential suggestions put forward in our Viewpoint article and discussed with funder representatives may lead to changed PPI practices and expectations by other researchers, research funding bodies and ethics committees. Once our Viewpoint paper is in the public domain we will be continuing active dissemination and further discussion with funders, who have shown considerable interest in the ideas raised. With their active encouragement, network members are also planning to apply for an NIHR programme development grant to take forward the work, particularly looking to map good practice and design, test different approaches to involvement, and build the dsicipline.
Sectors Communities and Social Services/Policy,Healthcare
 
Description Meeting with research funders 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Other audiences
Results and Impact We held an online workshop on 20 June with key senior figures from research funding and management organisations, including the UK National Institute for Health Research, the British Science Association, the UK Academy of Medical Sciences, the UK Health Research Authority, the Irish Health Research Board and the Irish Research Council. The research network presented results from our discussions around the involvement of seldom heard groups in research, with a particular focus on the involvement of people with different forms of cognitive impairment in the pre-award and grant set-up phases of research. We discussed how traditional forms of involvement, which rely on written and spoken articulacy, may exclude some important groups of people; how we might reconceptualise what 'involvement' might look like; and how researchers could be better supported to achieve this, including potentially some form of Centre for Involvement of People with Cognitive Impairment.
The funding representatives gave very positive feedback about the ideas presented and recoginsed the difficulties. We will be following up further with them once our planned Viewpoint paper is in the public domain. Meanwhile there was strong support for network members to seek further funding to pursue the topic, with an application for an NIHR Programme Development Grant suggested.
Year(s) Of Engagement Activity 2022