by Selina Wallis Patient, Public and Community Involvement Manager NIHR ARC North West Coast
At a recent ReCITE event, I heard about community innovation, creative health, catalytic grants and work that begins outside the usual language of health services. There was discussion of storytelling, participatory performance, creative practice and a writer in residence working with people who frequently attend Aintree Hospital’s Emergency Department.
It was not a conventional research presentation. It was not a tidy sequence of intervention, outcome and implementation. It was about trying things in particular places, with particular communities, and paying attention when an approach does not connect in the way it was intended to.
That matters for research.
Health research increasingly values public involvement, community knowledge and co-production. These are important commitments. But there is a risk that the language becomes familiar before the practice has changed. A project can have an involvement plan, a public contributor meeting and a well-designed dissemination strategy, while still leaving little room for people to influence the assumptions, questions or methods that shape the work.
The challenge is not whether community knowledge can be translated into research language. Some translation is necessary. Research needs accountability, clarity about purpose and evidence about what has happened.
The more difficult question is what can be lost when knowledge has to arrive in a particular form before it is recognised as valuable.
ReCITE, or Building Research by Communities to Address Inequities Through Expression, is a partnership led by Liverpool School of Tropical Medicine with Writing on the Wall as lead creative partner. Its work uses storytelling and creativity to address health inequalities, strengthen trust in health systems and help communities influence service design across Liverpool, Knowsley and Sefton.
The Aintree Writer in Residence initiative offers a useful example. The associated study is exploring the acceptability, feasibility and impact of a writer-in-residence programme for staff and people who use the Emergency Department frequently. The project sits within a wider Community Innovation Team bringing together clinicians, researchers and community organisations to understand local patterns of Emergency Department use and identify possible responses.
The value of a writer in residence is not necessarily that they provide a quick solution to repeated Emergency Department attendance. It may be that they create a different form of attention.
Routine data can show patterns of attendance. Clinical notes can record symptoms, diagnoses and referrals. Both are important. But neither necessarily captures how someone experiences repeated contact with services, what makes a particular setting feel safer than alternatives, or what has happened in the gaps between appointments.
Creative practice can create space for people to express those things differently. Through story, conversation, writing, performance, humour or reflection, people may communicate experiences that do not fit easily into standard service categories. This is not less rigorous than conventional evidence. It is different evidence, requiring researchers and practitioners to listen carefully and consider what it means for the work.
That does not mean every research project needs a writer, an artist or a theatre group. Creativity is not an automatic solution. It can be underfunded, treated as an add-on, or used in ways that ask people to perform difficult experiences without giving them any real influence over what happens next.
The important question is not whether a method looks innovative. It is whether it helps people shape the work.
This applies to public involvement as much as it applies to creative health. Involvement can sometimes begin with a format already decided by the research team: a focus group, a scheduled meeting, a set of papers, an online call or an expectation that people will enter an institutional space and contribute in familiar ways.
These formats can be useful. They can create meaningful opportunities for discussion and decision-making. But they are not always the right starting point for every community or every project.
When people do not attend, do not speak or do not return, it is tempting to describe the challenge as engagement. A more helpful question may be whether the approach has been designed around the lives, priorities and communication preferences of the people researchers hope to work with.
Community innovation asks us to take that question seriously.
It asks whether useful knowledge may begin in places not usually treated as research settings: community organisations, creative spaces, informal networks, libraries, cultural groups, peer support settings and local services. It asks whether research teams can work with methods that emerge through relationships, rather than expecting communities to fit neatly into methods decided in advance.
For ARC researchers and members, this is a practical issue rather than an abstract one.
Public involvement is most effective when people can influence the work at points where there is still room to change direction. Reviewing participant information, interview guides and dissemination plans can make a real difference. The further ambition is to create opportunities for people to shape research questions, identify gaps, challenge assumptions, improve methods and help interpret what findings mean in practice.
That is not always straightforward. Research projects have timelines, ethics processes, budgets, governance requirements and commitments to funders. Meaningful involvement does not require pretending those constraints do not exist. It requires being clear about them, identifying where influence is possible and avoiding situations where people are invited in only after the most important decisions have already been made.
NIHR defines public involvement as research carried out with or by members of the public, rather than to, about or for them. Its guidance for researchers emphasises the importance of planning, resourcing and supporting involvement properly.
Creative approaches can support that work when they are used thoughtfully. They can make space for different forms of expression. They can help researchers hear concerns that may not emerge through formal discussion alone. They can also challenge the assumption that the only valuable contribution is one made in academic language, in a meeting room, during working hours.
The key is not to treat creativity as decoration around a project that has already been fixed.
The key is to ask, early enough, what forms of listening, expression and relationship-building will allow people’s knowledge to shape the work.
For researchers, that may mean asking a few practical questions at the beginning of a project:
- Who is not likely to engage through our usual routes?
- What knowledge do we need that is not currently represented in the team?
- Which decisions are genuinely still open to influence?
- Are we asking people to adapt to our systems, or are we prepared to adapt our methods?
- How will we show people what changed because they contributed?
These are not questions with a single right answer. They are prompts to be more deliberate about how research relationships are built.
The lesson from community innovation is not that every project must become more creative. It is that people know when they are being spoken at, and they know when someone is genuinely paying attention.
Research needs rigour, evidence and accountability. It also needs room for knowledge that arrives through relationships, story, memory, humour, discomfort and local practice.
That is not the soft edge of serious health research. It is part of how serious health research becomes more relevant to the lives it is intended to improve.
Further reading
- ReCITE: Building Research by Communities to Address Inequities Through Expression
A Liverpool School of Tropical Medicine-led project using storytelling and creativity to address health inequalities and strengthen trust in health systems across Liverpool, Knowsley and Sefton. - Storytelling in Aintree Hospital Emergency Department
Health Research Authority summary of the study evaluating a writer-in-residence programme for staff and people who use Aintree Emergency Department frequently. - NIHR briefing notes for researchers: public involvement in NHS, health and social care research
Practical guidance on planning, resourcing and supporting public involvement. - NIHR ARC West: Working effectively with public contributors
Resources for building respectful, inclusive and effective involvement relationships.