Newcastle University: When lived experience changes the research question
A sustained role in Newcastle University’s dyspraxia research brought lived experience into questionnaire design, recruitment and the early development of a proposed intervention for adults with dyspraxia.
A research question can be correct and still miss the life around it
A questionnaire can be methodologically tidy and still be hard to answer. A proposed intervention can make sense on paper and still overlook the workarounds people use to get through an ordinary Tuesday. Even the most careful researcher can miss something when the subject of the research is also somebody else’s everyday life.
That is why Divergent Thinking values co-production when it is done properly.
Divergent Thinking’s relationship with Newcastle University did not begin as a training commission or a one-off speaking slot. Founder Nat Hawley joined a Lived Experience Advisory Group connected to dyspraxia research led by Tumi Sotire, a Research Assistant in Health Economics at Newcastle University. Nat contributed as a dyspraxic adult, a workplace neuroinclusion practitioner and someone who has spent years translating between personal experience, research and organisational reality.
Those are related forms of knowledge, but they are not interchangeable. Nat’s experience does not make him representative of every dyspraxic person. It does, however, help surface questions that may otherwise arrive too late: Is the language clear? Does it assume that everybody understands themselves in the same way? Is the research asking about the person, or only about the difficulty a service can see?
From questionnaire wording to a research conversation
The collaboration developed across several pieces of activity linked to the CODIM study, which is examining the real-life cost and impact of developmental coordination disorder, or dyspraxia, in adults. The advisory group reviewed questionnaire material, supported recruitment thinking and received updates as the study progressed.
In February 2026, the relationship widened. The group contributed to a patient and public involvement discussion that helped test the research framing. The proposed fellowship focused on developing a complex intervention to better support adults with dyspraxia.
Divergent Thinking valued the invitation because it was honest about the stage of the work. Contributors were not being shown a polished solution and asked to applaud it. They were being asked to help shape an early idea, including how lived-experience contributors might continue to work with the research if the fellowship went ahead.
That distinction is the difference between endorsement and involvement.
During the conversation, Nat drew on experiences of adult working life that can disappear inside broad descriptions of dyspraxia: the cumulative cost of planning, travelling, switching tasks, processing several instructions at once, recovering from mistakes and explaining needs to people who may only associate dyspraxia with handwriting or coordination.
The discussion also explored what would make any future intervention genuinely usable. A resource is not helpful simply because it contains good information. It has to meet people at the point where they need it, use language they recognise, and avoid placing another administrative burden on the person already managing the barrier.
The feedback that mattered
After the research discussion, Tumi wrote:
Feedback confirmed that the lived-experience contribution helped strengthen the research discussion.
— Tumi Sotire, Research Assistant in Health Economics, Newcastle University
It is a short piece of feedback, but it tells the truth about this kind of work better than an inflated impact claim would. At that stage, the value was usefulness to the research process: sharper questions and a clearer view of how contributors could stay involved.
A later CODIM recruitment update showed encouraging participation, subject to eligibility checks and data cleaning.
It is not an outcome Divergent Thinking claims as its own. Co-production should make research more relevant and accessible, but a recruitment total belongs to the collective work of the study team, its contributors, participants and community partners.
What co-production looks like when it is more than a label
The language of co-production is now everywhere. The practice is harder.
NIHR guidance on public involvement in knowledge mobilisation argues for involving people throughout the research cycle, not only at the design stage. It also recognises that public contributors can make evidence more relevant, accessible and useful to the people who will act on it.
In practice, Divergent Thinking looks for five things.
A real decision to influence. Contributors should know what is still open and what has already been fixed.
Enough context to think well. Sending a dense document the evening before a meeting is not equal participation.
More than one route to contribute. Speaking quickly in a group should never be the only way to be heard.
Fair recognition. Payment or reimbursement should be clear, timely and treated as part of the research design, not an awkward favour.
A visible feedback loop. Tell people what changed, what did not and why.
The Newcastle relationship included several of these features: an established advisory group, materials to review, structured PPI sessions, payment for contributors and updates on what happened next. That made it possible to contribute with substance rather than simply lend a name to the process.
Accessibility is part of research quality
When neurodivergent people are involved in research, accessibility cannot be a courtesy added after the methods have been designed. It affects who takes part, what they understand, how much detail they can offer and whether the findings reflect the community the study hopes to serve.
That can mean sharing questions in advance, using plain language alongside technical terms, allowing written follow-up and building pauses into discussion. It can also mean being explicit about ambiguity. If a question can reasonably be interpreted in three ways, the problem may not be the participant’s comprehension; it may be the question.
Acas describes dyspraxia as affecting movement and coordination while also recognising that people’s strengths and challenges vary. That variation matters in research. A study designed around a single, stereotyped profile will miss people whose experiences look different, including those whose greatest barriers are cognitive load, fatigue, organisation, speech or the social consequences of being misunderstood.
This is where lived experience and professional practice meet. In workplace training, Divergent Thinking asks where the friction sits between a person, a task and an environment. In research co-production, the same question is asked of the study itself.
What this collaboration demonstrates
The correspondence and study updates verify a sustained lived-experience advisory relationship, review of CODIM questionnaire material, a 90-minute NIHR PPI discussion and direct researcher feedback that the contribution was helpful.
Together, those sources demonstrate a form of collaboration in which lived experience is invited early enough to influence the questions, accessibility is treated as part of research quality and contributors remain connected as the work develops.
A practical invitation to research teams
If you are planning research with neurodivergent adults, begin before the questionnaire is finished. Invite people into the problem definition, not only the proofreading. Make the role, influence and payment clear. Ask what would make contributing easier, then create more than one way to respond.
Most importantly, go back. A second conversation often reveals more than the first because contributors have had time to process, notice and trust the relationship.
Divergent Thinking supports universities and research teams with lived-experience advisory input, accessible facilitation and research-to-practice work. Explore neuroinclusion consultancy or contact nat@divergentthinking.uk to discuss a project.
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