I’m co-producing a study with people living with young onset dementia, some of whom want to help co-analyse qualitative data — including transcripts of interviews with other participants. Ethically and legally, can lived experience co-researchers be given access to anonymised transcripts if they might recognise people or situations in the data? How do I balance rigorous co-production with safeguarding privacy?
Thank you for giving me a chance to answer this important question.
Co-production approaches often involve people with lived experience being involved in research activities such as co-designing the study, data generation and analysis. As with all research, when planning a co-production study, careful attention should be paid to ethical principles and practices. This should include gaining appropriate ethical approval in which it is clear that co-production methods are being used and ensuring participants are sufficiently informed about the study, including how the study will be co-produced, to enable them to make a decision about taking part and provide informed consent.
As with all research staff, lived experience co-researchers should be appropriately trained and supported to carry out their role. This might include training in data analysis as well as research integrity aspects such as data protection and confidentiality, and the principles underpinning research ethics. Together with the co-researchers, you may wish to consider how best to meet their support needs such as de-briefing processes or access to well-being resources.
From a research process perspective, there might be methodological considerations around whether whole transcripts of interviews are co-analysed or a sample of them or particular extracts, or whether the focus is on contextualising the findings, as well as how the data will be appropriately pseudonymised, stored and then accessed by co-researchers. There are resources available to help you, such as this guide to ethical principles in community-based participatory research.
You’re doing great work by thoughtfully integrating co-production into your research. With your commitment to ethical practice and genuine collaboration, you’re sure to create a meaningful and respectful study for everyone involved. Keep going—your careful approach is making a real difference!
