Mindfully reporting lived experience work
Authors: Brett Scholz
Journal: The Lancet Psychiatry (2024)

The Lancet Psychiatry's recent initiative to facilitate transparent reporting of lived experience work is promising.1Davis S Pinfold V Catchpole J Lovelock C Senthi B Kenny A Reporting lived experience work.Lancet Psychiatry. 2024; 11: 8-9Summary Full Text Full Text PDF PubMed Scopus (2) Google Scholar It represents a step towards answering the calls of people with lived experience and their allies for recognition of the meaningful contributions made by lived experience leadership.2Scholz B Gordon S Bocking J et al.'There's just no flexibility': how space and time impact mental health consumer research.Int J Ment Health Nurs. 2019; 28: 899-908Crossref Scopus (22) Google Scholar In particular, the acknowledgment that it is a limitation to conduct research "without lived experience involvement"1Davis S Pinfold V Catchpole J Lovelock C Senthi B Kenny A Reporting lived experience work.Lancet Psychiatry. 2024; 11: 8-9Summary Full Text Full Text PDF PubMed Scopus (2) Google Scholar demonstrates the value of knowledge produced through the application of lived experience. The growing emphasis on participatory approaches might lead to "people with lived experience [being] increasingly part of less meaningful engagement", as we have argued previously.3Scholz B Stewart S Pamoso A Gordon S Happell B Utomo B The importance of going beyond consumer or patient involvement to lived experience leadership.Int J Ment Health Nurs. 2024; 33: 1-4Crossref Scopus (2) Google Scholar The number of articles published each year claiming to have used a range of collaborative methods (such as co-design, service user involvement, or patient engagement) has increased by more than 600% over the past 10 years.3Scholz B Stewart S Pamoso A Gordon S Happell B Utomo B The importance of going beyond consumer or patient involvement to lived experience leadership.Int J Ment Health Nurs. 2024; 33: 1-4Crossref Scopus (2) Google Scholar Some of this research has been produced in legitimate partnership with people with lived experience, but often, vague terms are used to imply a greater amount of engagement than has actually occurred. To support more transparent reporting of lived experience work, co-authors working from a lived experience perspective should take the lead in reporting lived experience involvement in research. Other health professionals can be in a hurry to show what they might perceive to be ideal participatory approaches.3Scholz B Stewart S Pamoso A Gordon S Happell B Utomo B The importance of going beyond consumer or patient involvement to lived experience leadership.Int J Ment Health Nurs. 2024; 33: 1-4Crossref Scopus (2) Google Scholar For example, health researchers might claim they work in partnership with people with lived experience, when they have only done consultation. Participatory terms have specific meaning—eg, partnership requires power sharing, with people with lived experience having decision-making capacity.4Arnstein SR A ladder of citizen participation.J Am Inst Plann. 1969; 35: 216-224Crossref Scopus (9742) Google Scholar Thus, people with lived experience should be the ones to decide how to report on whether and how participatory goals have been met or missed in any given project. Transparent reporting means that teams should be open and honest about the extent of lived experience work in their research. Given the rush to show participatory approaches, other health researchers sometimes imply that meaningful collaboration with people with lived experience has been successful or even easy.3Scholz B Stewart S Pamoso A Gordon S Happell B Utomo B The importance of going beyond consumer or patient involvement to lived experience leadership.Int J Ment Health Nurs. 2024; 33: 1-4Crossref Scopus (2) Google Scholar It can be more refreshing when research reports that participatory goals could not be met either because of insufficient funding or time, for instance. Such reporting could also help make the case for why more resources are needed to move to a model that meaningfully partners with people with lived experience. Reporting openly about the role of power dynamics between lived experience researchers and others should also be encouraged. Research ecosystems are not set up to support lived experience work.2Scholz B Gordon S Bocking J et al.'There's just no flexibility': how space and time impact mental health consumer research.Int J Ment Health Nurs. 2019; 28: 899-908Crossref Scopus (22) Google Scholar Thus, researchers who do not work from a lived experience perspective might be unaware of power differentials, such as people with lived experience being excluded from decision making or agenda setting.5Scholz B Bocking J Happell B Improving exchange with consumers within mental health organizations: recognizing mental ill health experience as a 'sneaky, special degree'.Int J Ment Health Nurs. 2018; 27: 227-235Crossref PubMed Scopus (36) Google Scholar The benefits that come from ensuring health systems are planned, designed, delivered, and evaluated by people with lived experience are best realised when experiential expertise is truly valued.5Scholz B Bocking J Happell B Improving exchange with consumers within mental health organizations: recognizing mental ill health experience as a 'sneaky, special degree'.Int J Ment Health Nurs. 2018; 27: 227-235Crossref PubMed Scopus (36) Google Scholar The Lancet Psychiatry's initiative for transparent reporting of lived experience work is a good step forward in valuing experiential expertise. The next challenge will be to ensure that lived experiential knowledge is not co-opted, and that open and honest reporting makes more space for lived experience leadership to be part of system transformation. I declare no competing interests. Reporting lived experience workWorking with people with lived experience in mental health research carries a wide range of benefits. It can improve the quality, relevance, and translation of research, allow researchers a greater connection with the people whom their work aims to serve, and give a voice and power to those often marginalised.1 Lived experience perspectives are important for all research related to physical and mental health, helping to set priorities to ensure that the needs of people with particular conditions are being met adequately. Full-Text PDF