Unpacking the Impact and Experience of Working With Lived Experience Partners in Mental Health Research—Exploring Research Team and Public Partner Perspectives

• Patient and Public Involvement (PPI): Doing research with or by patients, carers and members of the public, rather than to, about or for them. They help shape how the study is designed and run.

• Lived experience: Personal, first-hand knowledge gained from living through something. Here, it means having had psychotic experiences and receiving talking therapy.

• Lived experience partner / public partner: A person who contributes their lived experience to a research team as an active collaborator.

• Lived Experience Advisory Panel (LEAP): A group of people with relevant lived experience who advise a study throughout its lifetime.

• Therapy Involvement Network (TIN): A second advisory group formed partway through the study. It was made up of people who had received the trial therapy, plus therapists who delivered it.

• Psychotic experiences: Unusual perceptions or beliefs, such as hearing voices or holding unusual suspicions. They can occur in milder forms that don’t meet the threshold for specialist psychosis services.

• NHS Talking Therapies (formerly IAPT): England’s primary-care psychological therapy service for common problems such as anxiety and depression.

• Randomised controlled trial (RCT): A study that tests a treatment by comparing groups allocated by chance. In a stepped-wedge cluster RCT, whole services switch to the new treatment at staggered times.

• Process evaluation: A sub-study that examines how and why an intervention worked or didn’t, rather than only whether it worked.

• Instrumental case study: In-depth study of one case (here, one research programme) to shed light on a broader issue.

• Actor map: A drawing in which participants map the people, organisations and connections in a project, and how important each one feels.

• Thematic analysis: A qualitative method for identifying recurring patterns (“themes”) in interview or discussion data.

• Positionality: How a researcher’s own identity and role shape the way they interpret data.

• Epistemic injustice: Unfairly discounting someone’s knowledge because of who they are, for example treating patients’ experiential knowledge as less credible than professional knowledge.

• Emotional labour: The emotional effort involved in managing one’s feelings to do a role. Here, it refers to drawing on personal distress for research.

• Tokenism: Including people symbolically, without giving them real influence.

The stated aim was to explore the experiences of people who worked together for 7 years on a mental health intervention study. The authors wanted to understand their differing perspectives on, and ideas of, the “impact” of PPI. This broke down into the following questions:

1. How did lived experience involvement shape the research study, from setup and intervention development through to the process evaluation?

2. How did the university-based study team and the LEAP members see and experience PPI, and where did their views agree or differ?

3. What helped or hindered meaningful involvement over a long, complex trial?

The authors deliberately gave no fixed definition of “impact.” They wanted to capture diverse views through open reflection rather than consensus, a stance they call dissensus. In the discussion, they also raised reflective questions about their own writing process: how to cultivate trust for honest reflection, who gets to tell whose story, and how to handle the power of authorship fairly.

Study design in brief: This was a qualitative case study nested within a 7-year NIHR-funded trial. The trial tested a talking-therapy intervention for people with psychotic experiences who fall between primary and specialist care. There were 13 participants: 6 staff and 7 people connected to the LEAP. Data came from three 90-minute online workshops: study team only (n = 4), LEAP only (n = 5), and mixed (n = 8). Workshops began with actor mapping. Two lived experience researchers co-facilitated the workshops and analysed the data using thematic analysis. All nine authors were also participants.

1. The teams saw the study’s structure differently. LEAP members’ actor maps placed themselves somewhat outside the study team. Their main link was the charity partner’s PPI coordinator, who acted as a “conduit.” The study team’s maps were more complex, with many actors of equal importance and therapists at the centre. Collaboration tended to happen with individual staff members rather than the whole team. This built individual relationships but not an inclusive team culture. When PPI coordination moved from the university to an external charity, some staff felt the PPI work became “divorced” from the core structures.

2. Impact took two connected forms.

• Tangible and practical impact: The LEAP validated the study idea early, which gave the investigators more confidence to apply for funding. Lived experience helped define the target group, described as patients “stuck in no man’s land.” LEAP members influenced recruitment materials, for example by introducing the less stigmatising idea of a “continuum” of psychotic experiences. They also contributed to systematic review criteria, newsletters, science festivals, review of results and the process evaluation. An impact log tracked these contributions.

• Relational impact: Relationships between people and teams shaped how the team worked. These relationships both enabled and blocked tangible impact. The data ended up telling a story about research team culture more than about specific outputs.

3. A four-stage “journey.” Participants described a story arc with four phases:

• early optimism and positive engagement

• a “choppy” period of friction and tension

• a phase of “just getting on with things”

• a positive ending through shared reflection, including writing this paper

4. Key sources of friction:

• Low confidence in doing PPI: Most of the study team had little experience with PPI. Over time, several core members stopped meeting the LEAP, which was not openly acknowledged until this paper. Some staff resented LEAP members who seemed to contribute little but were paid. However, some LEAP members processed information at their own pace and gave feedback outside meetings, so their contributions were less visible.

• Disputes over language: LEAP members wanted normalising language in the therapy training manuals. The study team chose technical, psychological terms. Some LEAP members felt “not listened to,” and a staff member admitted that the “rocky start” affected the relationship for the rest of the programme.

• Mixed messages about meetings: Some staff were discouraged from attending LEAP meetings and felt “excluded.” Meanwhile, LEAP members wanted more contact with the team. Each group felt the distance, but neither said so openly at the time.

• “Whose lived experience counts?”: The study team questioned whether the original LEAP had the “right” lived experience. LEAP members had psychotic experiences and had used Talking Therapies, but they hadn’t come through the same services as trial participants. A PPI review led by the study team, not co-produced, strained trust. One LEAP member felt told their experience “wasn’t relevant.” The team responded by creating the TIN around Year 4 and later merging it into the LEAP, which some academics welcomed. The co-PI also noted that researchers with their own lived experience can find it stigmatising to be treated as having none (the problem of “wearing two hats”).

• COVID-19 and remote working made the LEAP feel more separate from the team.

5. Positive experiences. LEAP members described the panel as a “safe space” that helped them grow. They valued its diversity and felt their lived experience “counts equally.” Flexible ways of contributing were appreciated. Informal moments, such as debriefs and breaks at in-person meetings, were often when things “clicked into place.”

• Honest, rarely published account: The authors describe this as a candid, difficult account that is seldom told in academic literature. There was a genuine commitment to PPI, but uncertainty about how to do it well. Distance and unclear communication caused misunderstandings, and repeatedly questioning people’s lived experience “haunted the project.” The first authors reflect on their own positionality and note that co-writing the paper was “cathartic and healing.”

• Impact shouldn’t be reduced to numbers: Efforts to measure PPI quantitatively have produced mixed results, and the authors compare such measurement to forcing a square peg into a round hole. PPI is evolutionary, unpredictable, subjective and context-specific. The authors distinguish measuring impact (technocratic, summative, quantitative) from evaluating contributions (reflective, collaborative). They support a critical agenda that treats PPI as a social practice of dialogue and examines power and possible harms.

• Relationships are central: Tangible impact rests on relational connections, shaped by power, role status and the dominance of the biomedical model.

• Recognised challenge: Disputes over “relevant” lived experience and hybrid academic/lived experience identities also appear in mental health services and higher education. Unresolved disagreement increases the emotional labour of lived experience work. Working through it constructively, however, can lead to innovation.

Recommendations:

• Invest in team-building and shared learning early, ideally in the first 2 years. This includes being realistic about what is possible within the NHS.

• Keep communication transparent and ongoing across all parts of a study, not only with the LEAP.

• Build regular reflective learning and open feedback loops throughout the project, so problems surface early and tangible changes can be agreed in time.

• Allow flexible, accessible ways for people to contribute, and value less visible forms of contribution.

• Co-produce decisions about who counts as having relevant lived experience, rather than making them top-down.

• Recognise and celebrate impact when it happens.

• Be open to changing team culture.

Limitations: The sample was small (13 people from a single case), though it included the core team and 10 people who had been involved since the start. The study was designed only near the end of the programme, so the data may be affected by recall, selection and retrospective bias. Senior and junior staff in the same workshops may have limited what people said. The facilitators’ positionality may have shaped the analysis, although validation with team members helped offset this. Findings are context-specific.

Conclusion: Impact is a nuanced idea that goes well beyond quantifiable value. Lived experience partners added value by validating the concept, contributing to the process evaluation and supporting trial setup, including the design of intervention training. Getting this value requires flexibility, openness and an inclusive team culture.