Section 5: Co-developing approaches that respect and value lived-experience

A powerful element of participatory research is that participants and co-researchers often draw on their lived-experience as part of the co-creation of data. Participants may share information they have not previously shared before with anyone and their contributions must be handled with respect at all times. Sensitive and respectful methods should be developed and co-designed to ensure that the research foci can be explored in a safe and meaningful way (Lenette, 2022). A helpful reflection of this is articulated in Ozkul (2020):

Despite the pressure from funders to find out innovative methods – participatory researchers would benefit from understanding participants’ own ways of conceptualising and investigating a phenomenon, in order to build their methodology...There seems to be a grave error, therefore, if researchers prioritise or select specific methods for participants. If one wishes to find out about a phenomenon that the participants themselves are interested in understanding, in the first place, one must employ techniques that the participants themselves would use.” (Ozkul, 2020, p.229 - p.232). 

Key Insights

Drawing on lived-experience: Practical Considerations 

 When participants wish to draw on and share their lived experience it is important to find different tools and communicative modes to support them to express their ideas, perspectives and expertise. An important caveat to consider is that while it is important to support self-expression, it is also important to respect when someone reflects and changes their mind about what they wish to share – it can be helpful to ensure there is time at the end of each research session to reflect on the ideas shared and discuss which elements are to be kept as data. This is helpful in terms of both power dynamics and safeguarding against the research becoming overly extractive (as opposed to promoting an equitable co-creation or exchange of knowledge).  

“Material methods offer a range of exciting possibilities for social research yet also entail ethical challenges and difficulties. Researching with objects can generate impact beyond research encounters, as people’s interactions with objects may help ‘accessing emotion and disseminating the power of participants’ accounts’ (Mannay, 2016, p.112). Simultaneously, people’s stories are often complicated, and material methods can open up sensitive areas of discussion. Participatory practice suggests that continually negotiating with participants who, and in what ways, may re-use materials can rebalance some of the affective impacts of research and the unequal power in research relationships (Cahill, 2007). Hoping to ensure ethical but impactful dissemination for this research, I asked permission to use participants’ objects, photos and narratives before and after focus groups, excluding those who wished their ‘objects’ to remain invisible.” (Peterson, 2022, p.25). 

Visual methods as a means of expressing expertise and valuing lived-experience 

Many projects have used visual methods to support participants/co-researchers to articulate and share their experiences, perspectives, ideas and expertise.  A helpful resource has been developed by Black, Chambers, Davies and Lewycka (2019) which offers ideas, guidance and templates for thinking through some of the practical and ethical implications The Practice and Ethics of Participatory Visual Methods for Community Engagement in Public Health and Health Science.

Video Case Study: CO-PACT 

A current example of the use of participatory visual methods is the Co-PACT study: this research is an experience-based investigation and co-design of approaches to prevent and reduce Mental Health Act use. This study works with mental health services in Birmingham, Bradford, London, Leeds, Manchester, Oxford and Derby, and co-produces data with service users of diverse ethnic backgrounds. This project uses photo-voice – an explanation of this method is given by Doreen Joseph (PPI Lead and Expert by Experience). To find out more about this project, please see video below.  

Case Study 1: Co-PACT: 


Key Literature


The complexity of using visual methods such as photo-voice can vary according to the context and location of the research: considerations around ensuring participants are supported to develop their own style and skills of expressing themselves is paramount. The following articles explore the complexity of using visual methods in different contexts and offer points for reflection and guidance on ensuring participants’ voices, ideas and expertise lead and guide the research processes.   For helpful reflection on the complexities of ethical dilemma that can arise in participatory research see Lenette and Colleagues (2019), and Guillemin and Gillam (2004) for a practical reflective framework.

  • Bezzina, L. (2022). Participatory video and diagramming with disabled people in Burkina Faso: Reflections on methods, representation and power. Disability & Society, 1-23. 
  • Black, G. F., Davies, A., Iskander, D., & Chambers, M. (2018). Reflections on the ethics of participatory visual methods to engage communities in global health research. Global Bioethics, 29(1), 22-38. 
  • Campbell, D. J., Campbell, R. B., Di Giandomenico, A., Larsen, M., Davidson, M. A., McBrien, K., ... & Hwang, S. W. (2021). Using a community-based participatory research approach to meaningfully engage those with lived experience of diabetes and homelessness. BMJ Open Diabetes Research and Care, 9(1), e002154. 
  • Davies, A., High, C., Mwangome, N., Hanlin, R., & Jones, C. (2022). Evaluating and Engaging: Using Participatory Video With Kenyan Secondary School Students to Explore Engagement With Health Research. Frontiers in Public Health, 10. 
  • Greenhalgh, T., & Fahy, N. (2015). Research impact in the community-based health sciences: an analysis of 162 case studies from the 2014 UK Research Excellence Framework. BMC medicine, 13, 232.
  • Guillemin, M. & Gillam, L. (2004) ‘Ethics, reflexivity, and “ethically important moments” in research’. Qualitative Inquiry, 10 (2), 261–80.DOI:10.1177/1077800403262360
  • Hicks, D., & Mallet, S. (2019). Lande: The Calais ‘Jungle’and Beyond. Bristol University Press. (Open Access available
  • Lenette, C. (2022). Cultural Safety in Participatory Arts-Based Research: How Can We Do Better? Journal of Participatory Research Methods, 3(1).
  • Lenette, C.; Stavropoulou, N.; Nunn, C.; Kong, S.T.; Cook, T.; Coddington, K.; Banks, S.; (2019) Brushed under the carpet: Examining the complexities of participatory research. Research for All , 3 (2) pp. 161-179. 10.18546/RFA.03.2.04.
  • Ozkul, D. (2020) 'Participatory Research: Still a One-Sided Research Agenda?', Migration Letters 17 (2) 229-37
  • Peterson, M. (2022). Objects in focus groups: Materiality and shaping multicultural research encounters. Qualitative Research, 22(1), 24–39.
  • Salem, H. (2020). The Unheard Voices of Refugee Students: Understanding Syrian Students’ Well-Being and Capabilities in Jordan’s Double-Shift Schools. 

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Cite as: Scott-Barrett*, J., Marshall-Brown*, A., Livingstone-Banks, M., Chrisinger, B., Scher, B., Hickman, M. (2023) Participatory Research: Researcher Insights. University of Oxford *(joint first authorship)