2pm-4pm, 6th May, 2026

Franklin Wilkins Building, King’s College London and MS Teams

Our May session of the PhD Participatory Research Network was our second hybrid session, bringing together both returning and new members. During this session, we welcomed PhD students from King’s College London, Queen Mary University of London, Goldsmiths University of London, Oxford Brookes, Durham University, University of East London, Nottingham Trent, Birbeck, Brunel and University of Lincoln, Birmingham, Glasgow, Greenwich and Calgary.

Co-Dissemination and Impact

This session was led by Dr Aimee Fletcher, a recent PhD graduate and Participation Coordinator at Scottish Autism. Aimee held an interactive session on co-dissemination and impact, reflecting on the strategies she utilised during her PhD, the plans she initially developed, and how these approaches worked in practice. She also shared insights into how co-dissemination skills can be developed and applied beyond academia.

What is co-dissemination?

Aimee opened with a definition of co-dissemination, which at its core is about collaboration.

Co-dissemination involves working alongside communities, stakeholders and individuals outside academia throughout the entire research process. Aimee highlighted several important aspects of co-dissemination, explaining that it should:

• Involve the community your research aims to serve
• Make research more accessible by allowing it to go beyond academic spaces.
• May influence policymaking

Co-dissemination at the PhD level

Aimee acknowledged that thinking about the impact of your research can be a daunting process that most PhD students experience. She linked this directly to imposter syndrome, as we often feel we are not the right person for the project and that our research could not reach the heights of others’. Reflecting on her own experience, Aimee emphasised that co-dissemination does not need to be scary; these processes are naturally messy and is it ok to take a step back when thinking about impact.

Two key questions when thinking about co-dissemination and impact:

1. Who is this research for?
2. How can I meaningfully engage and include them?

Rather than aiming for perfection, Aimee encouraged the group to focus on transparency and adaptability. Most importantly, she highlighted that your PhD is a time for learning, which will prepare you for your future career and projects where you will utilise your skills and adapt from lessons learned.

A key message: Impostor syndrome is extremely common in research; you are not alone, and you deserve to be where you are. Avoid comparisons and conduct participatory research in a way that best supports your target community, works for your research, and is within your means.

No one is an expert, and this is the beauty of participatory research: it is about the power of sharing knowledge together.

Aimee’s PhD experience: Neurodivergence in Museums: Making the Cultural Heritage Sector Accessible using Participatory Practices

Aimee’s PhD ran from October 2020 to September 2024. Her project was informed by both informal and formal collaboration approaches and her own lived experience. Over 1,000 people contributed to her research through various approaches, including social media discussions, neurodivergent communities and interactions during conferences.

As an autistic researcher, Aimee brought her own lived experience into her work, while remaining cautious not to become “one voice speaking for all”. She therefore aimed for a transferable and transparent approach, where she was open about her position and listened to others.

Aimee’s participatory approach was guided by a simple mantra:

Listen – Reflect – Adapt

Throughout her PhD, she consistently adapted her research in response to feedback from those involved, implementing a reflexive and proactive response to community needs, particularly regarding data collection. Aimee also stressed the importance of the principle: “nothing about us, without us”, which she used as a constant reminder that research requires diverse representation for a better understanding of the needs and wants of the community.

Aimee’s participatory plans: Balancing Ambition with Reality

Like many researchers beginning participatory research, Aimee started with what she now calls ambitious plans. Initially envisioning focus groups, advisory panels, collaborative data analysis, and “walk and talk” sessions, the reality of conducting participatory research during COVID-19, alongside the restrictions of a PhD, such as time and funding constraints, and the challenges of being a one-person team (with support from PhD supervisors), meant that some plans were not feasible. One particular challenge faced was the ethics of including participants in analytical stages, as it was unrealistic to ask community members to review such large volumes of data and meaningful co-analyses data as initially hoped.

So, what did Aimee do?

• Aimee held two workshops to help shape research questions, methods and resources.
• To enhance accountability & transparency: created “what to expect” booklets and produced summary tables highlighting what was discussed and what emerged from the discussions.
• She received feedback on surveys and adapted them accordingly before distribution.
• Informal methods: Her findings and research progress were constantly shared on Twitter, asking for feedback. She also shared conferences and wrote blogs.
• Workshops to explore themes of findings and provide options for a 1:1 meeting.
• Research was made accessible via posters, recorded presentations and dissemination in community spaces.

Lessons learned and reflections:

Looking back on her PhD, Aimee shared several key lessons:

• Be ambitious, but realistic about what can be achieved within your timescale and PhD budget.
• Take time to understand the community and what matters to them.
• Build trust through openness and transparency: Acknowledge power dynamics and accept you may not always have the answers.
• Share the research process consistently, not just the findings
• What you learn from the process is what’s important – not about getting everything “perfect”

Although Aimee is not currently in a formal research role, her passion remains in research, and she now utilises her skills as a participation coordinator. One example she shared of applying the principles of participatory research in her current role was establishing an Autistic Advisory panel and ensuring accessibility needs were fully met.

Q&A Highlights

How did you approach co-dissemination? My supervisor said it’s not a good idea due to publication concerns.

Aimee explained that much of her dissemination was informal, particularly through social media. She suggested that writing blogs or sharing general overviews of research can be a useful way to engage audiences without disclosing unpublished findings.

Q: Do you have any advice on tackling imposter syndrome, particularly for someone without lived experience?

A: Aimee noted that the principles of collaboration apply whether researchers have lived experience. She encouraged attendees to take a step back and ask what the community needs. All should remain cautious about positioning themselves as speaking “for” entire groups rather than on behalf of/alongside.

Q: How do you ensure you maintain consistent community involvement on a small budget?

A: Aimee notes that we should be striving to pay/financially recognise people for their time and sharing their lived expertise, but acknowledged that payment may not always been available or the preference of the individual. She reinforced the importance of working with individuals to recognise how they would like their contributions to be recognised; it might be access to training or specific resources, a certificate recognising their contribution, cards. Ideally, it is specific to an individual’s preference.

Q: With informal dissemination, how do you bridge the gap between policy & community (prevent funders and individuals from taking up the voice)?

A: Aimee reflected that much of this work comes down to ongoing advocacy and maintaining accountability to the communities involved.

Q: Regarding your use of social media – did you already have that platform to approach, or is this something you created during your PhD? How do you build on this to a point where you have high interaction?

A: Although she already had some presence on platforms like Twitter and LinkedIn, her audience grew organically as she shared both her research journey and aspects of her life beyond academia. Showing authenticity and humanity helped foster meaningful engagement.

Group discussions & the interactive activity: The co-dissemination help sheet

Aimee’s session ended with an interactive activity that allowed group members to reflect on their own research, answer key questions, consider co-dissemination methods, and determine what impact they’d like their research to have. The sheet consisted of two main sections 1. Co-Dissemination Planning Sheet 2. Legacy-Focused Planning sheet, with the following questions:

Co-Dissemination Planning Sheet:

1. Research in Plain Language: In one sentence, what is my research about and why might someone outside academia care?
2. Who Might This Matter To?
3. What Matters to Them? What questions, decisions, or problems do these groups have that relate to my work?
4. Co-Dissemination Opportunity: How could they help shape, interpret, or share the research? (e.g., feedback on findings, co-authoring outputs, helping choose formats or sharing through their networks)
5. Output (Good Enough, Not Perfect): What is one output that could work for both academic requirements and community/other stakeholder needs?
6. Timing (PhD-Realistic): When could this happen without delaying my thesis?
7. Support Needed: What do I need to make this happen?

Legacy-Focused Planning Sheet

1. Desired Legacy: “After my PhD ends, something that could still matter is…”
2. Type of Legacy (Choose One Primary)

• Resource (guide, toolkit, database)
• Process (way of working, method)
• Relationship (network, partnership)
• Change in practice or thinking

3. Sustainability Check

• Who could use this without me?
• What would they need to maintain it?
• What could realistically be done during my PhD?

4. Minimal Viable Legacy: What is the smallest version of this legacy that is still meaningful?
5. Risks & Boundaries: What I will not take on:
6. Ethics & Emotional Labour Check

• Am I being asked to represent a group, issue, or community beyond my role as a PhD?
• Would I still do this if it didn’t “count” for impact?
• Is this labour visible or invisible in academic systems?
• Do I have the authority to make the commitments implied?

For the legacy planning sheet, Aimee expressed that “if more than one feels uncomfortable, pause or scale down”.

Aimee noted that the planning sheet may work for some projects or communities more than others, but it is a way of starting the thought process. Members expressed that this activity was extremely beneficial, asking questions they had not considered, which will help them better decide and incorporate dissemination methods.

Toolkit discussion

The session closed with group discussions on our toolkit development and key points to highlight regarding co-dissemination. Members identified the following barriers and priorities:

Barriers at the PhD level:

• Building community trust takes time.
• Challenges to co-analysis and dissemination due to accessibility
• It can be difficult to disseminate research before viva.
• The emotional cost of a PhD is real and invisible.
• Academic spaces can be perceived as inaccessible and distorted from the lived experiences of community members.
• Overambition
• Imposter syndrome can make you doubt your abilities.

What students should know:

• Be ambitious but realistic.
• Consider the importance of informal participation/participatory approaches, e.g., use of social media.
• It’s okay to not do it all and be it all.
• Dissemination through workshops can work well, as they are interactive and help people better understand research.
• Reduce academic terms when engaging with community members.
• Do what you can within your means: Some co-dissemination is better than none.
• Start the process and conversations early, not just after findings.
• Get to know your audience before you start.
• A small impact can be the start of something big.
• Co-dissemination can happen in different ways.
• Being accessible means being more accountable and transparent.

16th April, 2026

Lunchtime Webinar by Katrina Messiha
Becoming Participatory in Public Health: Theoretical Foundations and Practice of Co-creation

The PhD Participatory Research Network recently welcomed Katrina Messiha, a Social Scientist and a PhD Fellow (Amsterdam University Medical Center) for a lunchtime webinar on co-creation and participatory research in public health. The session was shaped by themes suggested by our network and brought together PhD researchers from the UK, Europe, Australia, South Africa, and beyond.

Katrina’s talk drew on her doctoral research, Theory-based Principles for Co-creation in Public Health, and positioned co-creation not simply as a popular participatory approach, but as a methodological and theoretical challenge in public health research. She argued that while co-creation is now widely used, it remains explicitly theoretically under-specified and is often applied inconsistently. Rather than treating it as a fixed method or universal solution, Katrina framed co-creation as a complex, relational and iterative process that needs to be aligned with the realities of public health complexity.

Katrina started by talking through some of the key terms we often hear in this space (e.g., participation, involvement, engagement, and co-creation) and why they do not mean the same thing. One of the clearest points was that these approaches can entail very different levels or extents of power-sharing, even if they’re sometimes used interchangeably. She also made a helpful distinction between qualitative research and co-creation, pointing out that co-creation may be less about gathering people’s views and more about sharing decision-making.

Katrina also drew an important distinction between qualitative research and co-creation. While qualitative research may entail gathering people’s views, co-creation goes further by engaging stakeholders in shaping decisions, defining priorities and contributing to knowledge production. This helped clarify why participation, involvement and engagement should not automatically be treated as equivalent. Co-creation, in this framing, is not only about listening to people, but about reconsidering who has influence over the research process itself.

A big theme throughout was the need to be careful and specific in how we use participatory approaches. Katrina spoke about some of the common issues in the field, like tokenism, fragmented practice. Rather than assuming co-creation is always the “right” approach, she encouraged us to think more critically about when it actually makes sense to use it. She also noted that the increased interest in co-creation has led to inconsistent and superficial applications, and emphasised that co-creation should not be viewed as a “universal solution”. Moreover, as researchers, we may assume more stakeholder engagement is always better, but Katrina encouraged us to think more carefully about what level of stakeholder engagement actually fits the project, the context, and the related stakeholders’ interests, motivations and capacities.

A particularly useful part of the talk was Katrina’s discussion of when co-creation is actually appropriate. She explained that co-creation may not be needed where a solution already exists and works well, or where a problem can be addressed independently. However, where problems are complex, context-dependent or poorly understood, co-creation can help bring together different forms of knowledge and support the development of more workable, meaningful and context-sensitive solutions. This was a helpful reminder that co-creation requires methodological judgement, rather than automatic application.

Katrina unpacked tokenism not only as a problem of superficial engagement, but as something that can have real consequences for participants and co-creators. She noted that when people are invited into research without genuine influence, this can lead to disappointment, mistrust and what has been described as the “dark side” of co-creation. This point was especially valuable because it moved the discussion beyond simply advocating for more participation and towards asking whether participation is meaningful, honest and appropriately designed.

Another big theme throughout Katrina’s talk was the importance of considering theory. One of the main messages was that participatory research often doesn’t make its theoretical foundations very visible. The main key takeaway message was: if we’re using theory, we should say so clearly, explain why, and show how it’s shaping what we do, and don’t just leave it in the background.

Katrina’s emphasis on theory was one of the strongest parts of the webinar. Drawing on her systematic review of contemporary theories used in co-creation, co-design and co-production in public health, she explained that from nearly 5,000 screened papers, only 10 explicitly used theoretical underpinnings. She used this finding to show that the lack of theory in co-creation is not just a conceptual issue, but an empirical gap in the evidence base. Theory, she argued, matters because it can guide intervention design, inform methods such as interview guides and evaluations and make research more transparent, reproducible and cumulative.

Katrina also showed how co-creation research can benefit from looking beyond public health. Drawing on her cross-disciplinary work, she discussed common process dimensions of co-creation, including multi-stakeholder collaborative action, co-learning towards innovation, contextual knowledge production, generating meaning and open, trustful and inclusive dialogue. These dimensions were presented as practical ways of thinking through how co-creation actually happens, how it is experienced and how it can be communicated more clearly in research.

Another distinctive contribution of the webinar was the discussion of critical realism as a promising methodological lens for public health co-creation. Katrina explained that critical realism can help researchers look beyond what is immediately visible and consider the underlying mechanisms shaping public health outcomes. Rather than understanding causality in a simple or linear way, this approach asks how social, political, institutional and relational factors interact in particular contexts. This offered a valuable way of thinking about how co-creation can support deeper causal understanding, rather than remaining at the level of surface-level participation.

She also addressed the realities of how messy co-creation can be in practice. It doesn’t tend to follow neat steps, and instead relies a lot on relationships, trust, and flexibility, especially when working with marginalised communities. She shared examples from her University of Cambridge work on dementia and healthcare access, showing how participatory approaches can surface barriers that might otherwise be missed using traditional methods.

In the dementia case study, Katrina showed how co-creation can reveal barriers that may remain less visible through more traditional research methods. These included fragmented health and welfare systems, delayed diagnosis, rigid eligibility criteria, inaccessible information, stigma, distrust, fear of being judged or surveilled and suspicion towards institutions and researchers. The case study demonstrated that trust is not something researchers can assume; it has to be actively built through authenticity, transparency, continuity and flexible forms of engagement.

Katrina’s discussion of Youth Participatory Action Research further illustrated the practical tensions involved in participatory work. She emphasised that equitable engagement cannot be assumed simply because a project uses participatory language. Instead, researchers need to actively manage power dynamics, create safe and welcoming environments and consider whether young people are being treated as data sources or as genuine decision-makers. This was a useful reminder that participatory approaches require ongoing reflexivity, not only good intentions.

Katrina also introduced the importance of role transparency in co-creation research. She explained that clearly reporting stakeholder roles is not only about giving credit, but also about understanding how knowledge was produced, how decisions were made and how participatory processes can be planned, evaluated or replicated. Her framework was presented in its utility for both prospective application, for negotiating roles and responsibilities with co-creators, and retrospectively, for analysing and reporting what happened during a project.

In the Q&A, we spoke about “insider researchers” (i.e., people researching topics they also have lived experience of) and how they fit within participatory approaches. Katrina described this as an open question, depending on the different “hats” a researcher holds, and suggested that greater representation can be a strength, but isn’t the same thing as co-creation on its own.

Overall, the webinar encouraged us to move from a general enthusiasm for participation towards a more careful and rigorous understanding of co-creation. Katrina’s central message was that co-creation should be defined clearly, theoretically grounded, designed with attention to context and power and reported transparently. For PhD researchers, this offered a valuable framework for thinking not only about how to engage stakeholders, but also about why, when and under what conditions participatory research can produce meaningful knowledge. Thank you so much, Katrina for a fantastic talk!

Curated tools, resources, and key readings kindly shared by Katrina:

• Health CASCADE (Marie Skłodowska Curie Innovative Training Networks project funded by the European Union) blog: https://healthcascade.eu/blog/
• Science of Co-creation ChatBot: https://healthcascade.eu/training/
• Co-creation Masterclass Episodes: https://healthcascade.eu/resources/recordings/

Most recent peer-reviewed publications by Katrina:

Messiha, K., Chinapaw, M.J., Ket, H.C., An, Q., Anand-Kumar, V., Longworth, G.R., Chastin, S. and Altenburg, T.M., 2023. Systematic review of contemporary theories used for co-creation, co-design and co-production in public health. Journal of Public Health, 45(3), pp.723-737.

Messiha, K., Altenburg, T.M., Schreier, M., Longworth, G.R., Thomas, N., Chastin, S. and Chinapaw, M.J., 2024. Enriching the evidence base of co-creation research in public health with methodological principles of critical realism. Critical Public Health, 34(1), pp.1-19.

Messiha, K. and Stokes, G., 2024. A Qualitative Study on the Contemporary Perspectives and Experiences of Co-residence During COVID-19 Among “Boomeranging” Young Adults and Their Mothers in England. SAGE Open, 14(4), p.21582440241307473.

Messiha, K., Altenburg, T.M., Giné-Garriga, M., Chastin, S. and Chinapaw, M.J., 2025. Enriching the Existing Knowledge About Co-creation: Identifying Dimensions of Co-creationUsing Explicit Theory in Various Research Fields. Minerva, pp.1-24.

Messiha, K.*,Thomas, N.*, Brayne, C., Agnello, D.M., Delfmann, L., Giné-Garriga, M., Lippke, S. and Downey, J., 2025. Grey literature scoping review: a synthesis of the application of participatory methodologies in underrepresented groups at an elevated risk of dementia. BMC Medical Research Methodology, 25(1), p.122.

Messiha, K., Chinapaw, M.J., Chrifou, R., Deforche, B., Pehlivan, T., Strating, G., Verloigne, M. and Altenburg, T.M., 2026. Key considerations in applying youth participatory action research: elicited insights from international academics and practitioners-a health CASCADE study. International Journal of Adolescence and Youth, 31(1), p.2645826.

Agnello DM*, Loisel QEA*, An Q, Balaskas G, Chrifou R, Dall P, de Boer J, Delfmann LR, Giné-Garriga M, Goh K, Longworth GR, Messiha K, McCaffrey L, Smith N, Steiner A, Vogelsang M, Chastin S., 2023. Establishing a health CASCADE–curated open-access database to consolidate knowledge about co-creation: novel artificial intelligence–assisted methodology based on systematic reviews. Journal of medical Internet research, 25, p.e45059. *co-first authors.

An, Q., Sandlund, M., Lundell, S., Kuenen, C., Chastin, S., Helleday, R., Messiha, K., Loisel, Q. and Wadell, K., 2025. Transition design: Co-creating system solutions for chronic obstructive pulmonary disease (COPD) care. Design Studies, 98, p.101297.

Anand-Kumar, V., Schreier, M., Bakshi, N., Messiha, K., Longworth, G.R., An, Q., Angello, D.M., Chastin, S. and Lippke, S., 2025. Facilitators and challenges of co-creating digital public health interventions: A Health CASCADE multi-case exploratory study. Public Health, 247, p.105847.

Chastin, S.F.M., Smith, N., Agnello, D.M., An, Q., Altenburg, T.M., Balaskas, G., de Boer, J., Cardon, G., Chinapaw, M.J.M.,Chrifou, R., Dall, P.M., Davis, A., Deforche, B., Delfmann, L.R., Giné-Garriga, M., Goh, K., Hunter, S.C., Leask, C.F., Lippke, S., Loisel, Q.E.A., Longworth, G.R., McCaffrey, L., Messiha, K., Morejon, S., Pappa, D., Papadopoulos, H., Ryde, G.C., Sandlund, M., Schreier, M., Steiner, A., Verloigne, M., Vogelsang, M., Wadell, K., (2025). Principles and attributes of evidence-based co-creation: From naïve praxis toward a trustworthy methodology-A Health CASCADE study. Public Health, 248,p.105922.

Chrifou, R., Focquaert, F., Messiha, K., Ghaly, M., Altenburg, T., Deforche, B. and Verloigne, M., 2025. The meaning of ethical collaborative research according to young people. International Journal of Adolescence and Youth, 30(1), p.2517099.

Delfmann, L.R., de Boer, J., Schreier, M., Messiha, K., Deforche, B., Hunter, S.C., Cardon, G., Vandendriessche, A. and Verloigne, M., 2025. Experiences with a co-creation process to adapt a healthy sleep intervention with adolescents: A Health CASCADE process evaluation. Public Health, 241, pp.69-74.

Longworth, G.R., Goh, K., Agnello, D.M., Messiha, K., Beeckman, M., Zapata-Restrepo, J.R., Cardon, G., Chastin, S. and Giné-Garriga, M., 2024. A review of implementation and evaluation frameworks for public health interventions to inform co-creation: a Health CASCADE study. Health Research Policy and Systems, 22(1), p.39.

McCaffrey, L., McCann, B., Giné-Garriga, M., An, Q., Cardon, G., Chastin, S.F.M., Chrifou, R., Lippke, S., Loisel, Q., Longworth, G.R., Messiha, K., Vogelsang, M., Whyte, E., Dall, M.P., 2024. Adult co-creators’ emotional and psychological experiences of the co-creationprocess: a Health CASCADE scoping review protocol. Systematic Reviews, 13(1), p.231.

McCaffrey, L., McCann, B., Giné-Garriga, M., An, Q., Cardon, G., Chastin, S.F.M., Chrifou, R., Lippke, S., Loisel, Q., Longworth, G.R. and Messiha, K., Vogelsang, M., Whyte, E., Dall, M.P., 2025. Co-creationexperiences among adults in diverse contexts: A Health CASCADE scoping review. Public Health, 238, pp.29-36.

For other publications by the project: https://healthcascade.eu/publications/

Katrina’s LinkedIn: https://www.linkedin.com/in/katrinamessiha/

Katrina’s ResearchGate: https://www.researchgate.net/profile/Katrina-Messiha