Fresh approaches to PPIE (patient and public involvement and engagement) in research are needed to ensure good quality research that is fit for purpose. NIHR Programme Grants for Applied Research (PGfAR) is seeking to increase opportunities for partnerships through our Programme Development Grant Scheme. Below is a case study of one of the successful applications from the first call, which took place in 2022.
Title: Participatory Arts in Health and Care Research (PAIR): Building a North-West consortium for developing innovative arts approaches to Public and Person Involvement and Engagement
Lead Researcher: Dr Paul Clarkson
Co-Chief Investigator lead at the community organisation: Mr Paul Hine
Contracting Organisation: Pennine Care NHS Foundation Trust
Community partner organisation: Made by Mortals CIC
Funding: £125,678.70
Why we applied to this funding call.
Our community groups hold knowledge in the form of lived experience that can make a substantial impact on helping others through research. The people we work with want to use their experience to inform and challenge local and national health and social care policy, strategy, and practice. We have found that traditional methods of community consultation/engagement do not work for our community groups and have resulted in negative experiences, including feeling:
- “Used” and in some cases “retraumatized” by sharing their story.
- “Not really listened to”
- Like they are a “problem” to be fixed.
- “Appalled” by the lack of humanity within the case studies held for/about them by local services.
- “Inadequate” or “stupid” surrounded by language they do not understand and people they do not trust.
- “Left in the dark” about what has happened with what they have shared.
- “Pressured” into giving answers they believe other people want to hear and not what they really think/feel.
- Like their worth is wrapped up only in their lived experience and not in other areas of who they are, such as their capabilities and creativity.
- “Fed up” that peer support is under-resourced and undervalued.
- “Disappointed” that their involvement starts and ends with them sharing their experiences and does not involve them in the priority setting, or service design/delivery, or bringing about/sharing the change they want to see.
The Directors of Made by Mortals (Paul Hine and Andy Smith) come from a theatre and music background. They have worked with people's lived experience throughout their careers. Drawing on people's experiences and understanding of the world has always been key to how they co-create theatre and music. They set up Made by Mortals as a methodology to support people to ‘tell their story’ in an empowering way and contribute to discussion and debate from a place of strength. They look to ensure that the process of sharing lived experience is beneficial for the people who took part. Beneficial in terms of the positive changes that can result from their contribution but also beneficial in a more immediate sense. The potential benefits for people taking part in the work include skills development, improvements in wellbeing, increased social connections, exposure to culture, and of course, where possible, financial benefits.
This PDG is the next natural progression for Made by Mortals and allows a collaboration of like-minded thinkers to come together with a shared vision of how communities can take part in research in a more creative, fun, and empowering way. The project collaboration also enjoys a broad range of skills (artists, researchers, community engagement leads, and community members), networks, and geographical reach to take our collective mission to the next stage of its development.
Benefits to service users and NHS
Participatory arts is the process of people making and taking part in the creation of ‘art’. In health and care research, participatory arts offer great opportunities for service users and patients to share and create experiences and shape research by ‘bringing their experiences to life’. Examples of participatory arts suitable for use in research are podcasts, music, theatre shows, film, and storytelling. However, it is crucial to gain a better understanding of their use, influence, and potential across all research stages – from naming problems or concerns (priority setting), to design, planning, and delivering research and sharing findings and learning. By building a network of researchers engaging in participatory arts, collecting data on the approach’s barriers, challenges and potential impact, this PDG will prepare a large-scale Programme of research. Ultimately, this research will help ensure that there is a direct benefit to people and their communities from being involved in research utilising participatory arts.
Aims of the project
This research project aims to strengthen relationships between community organisations, people involved in research, researchers, and users of research, through participatory arts. The learnings will be used to develop a NIHR Programme Grant application, to show how innovative participatory arts can be used in public involvement, to inform and benefit a collection of health and care research studies. Participatory arts ‘taster’ workshops with the associated NHS Trust and community groups are planned with the goal of encouraging further collaborations for the full Programme proposal. The project will focus on two areas in which participatory arts approaches are less, if at all, used: priority setting and sharing research findings, to show the impact these approaches can have. Co-produced materials will then be used to spread the participatory arts approach to other organisations and geographies and explore barriers and opportunities to involvement in participatory arts.
Project Design
This research project is structured around 6 distinct pieces of development work across 12 months (Figure 1):
- Team building: Building on existing networks and links to the NIHR infrastructure, the team will develop a North West consortium led by the community organisation Made by Mortals, researchers at the universities of Manchester and Lancaster, and the host Trust, Pennine Care NHS Foundation Trust. This will include meetings with stakeholders/collaborators joining for different purposes, and to develop the participatory arts model for research and research engagement across a wider geography.
- Workshops: A series of workshops will be held to explore and promote the developed participatory arts model further, extend its reach and explore ways of evaluating the approach. Each workshop will then go on to discuss how the needs of different public, patient or service user groups could be explored and develop proposals for research evaluation, with this approach at their centre.
- Development of methodologies for using the participatory arts approach: The team will design and develop 'methodologies' for using the participatory arts approach. This will include the review of existing guides and frameworks for arts based approaches in health as well as PPIE guides, and finally bringing together the learning from the review with learning from the engagement activities/workshops to develop the impact methodologies and outcome measures for evaluation during a Programme Grant.
- Design of promotional activities: The research team will design a series of promotional materials and activities to disseminate newly developed methodologies. These materials/activities will demonstrate the developed participatory arts approach alongside targeted groups of underserved people and researchers in relation to established areas of the research process.
- Scoping exercise: A scoping of the field, from the literature and through consultation at the above events, will be conducted to gather insight around the external and internal barriers and facilitators that are held around the further rollout of the developed participatory arts approach.
- Development of a subsequent PGfAR application: Throughout, from the meetings, workshops, and in designing methodologies and materials, the team will plan and draft an application for a full Programme Grant.
Figure 1: Logic Model – Made by Mortals Participatory Arts for Public Involvement
Processes and activities
- Use of participatory arts (e.g., music, film, theatre) during the key stages of the research process
- Co-creation and production between artists, experts by experience, academic and practitioner researchers, commissioners and policy makers
- Communication and dissemination activities
- Training and skills development
Reach
- Under-served groups (experts by experience)
- Academic and practitioner researchers
- Health and care practitioners and commissioners
Outputs
- Creative artistic products based on research findings and lived experiences (e.g., piece of forum theatre, audio podcast)
Workshops, conferences and live events to reach wider audiences
Change mechanisms
- Generating ideas from communities
- Shared ownership, everyone participates
- Under-served groups better able to express themselves
- Level of comfort in participation
- Authenticity of outputs
- Avoidance of labelling or stigmatisation
- Encourages reflection on sensitive issues
Outcomes
Under-served groups:
- People more empowered to act
- Pride and confidence
- Participant wellbeing and social connections
- Changes of importance to under-served groups
Pubic involvement in research
- Increased representation of under-served groups
- Power imbalances reduced
- Identification of new possibilities/priorities
- Deepened understanding of an issue (based on lived experience)
- Research findings shared in an accessible and meaningful way
Changes in policy and practice
- Issue understood in a new way, challenges pre-conceived views on an issue