Public involvement in research - how do we do it in a meaningful and ethical way?

Involving patient or representatives for the public in research leads to improvements in both the research process and the results. However, knowing how to work with involvement is not always easy. In this project, we investigate public involvement with forced migrants, to see how this can be done in a meaningful and ethical way.

Description

Involving patient or representatives for the public in research leads to improvements in both the research process and the results. However, knowing how to work with involvement is not always easy. In this project, we investigate public involvement with forced migrants, to see how this can be done in a meaningful and ethical way.

In CHAP, we work with public involvement in several of our research projects, mainly with children and families. The involvement activities differ between project, but often include that children or parents are included in the project team, that we collaborate around data collection or write articles together.

This project focuses specifically on public involvement with forced migrants. We are specifically interested in the perspective of those involved in research. We are also interested in exploring group dynamics in a meeting where experts with different kinds of knowledge – experience-based, professional, academic – meet. We observe these meetings, using an observation protocol, developed for assessing involvement in research meetings. Finally, we investigate the ethical aspects of involvement with forced migrants, aiming to create an ethical framework for involvement in research.

Projekt team

Georgina Warner, Associate professor

Elin Inge, PhD

Contact

Reach out to Elin Inge with questions regarding this study.

Publications

Inge, E., Elmi, N., Omar, Y. et al. Patient and Public Involvement with Forced Migrants: An Empirical Exploration of Ethical Issues. Bioethical Inquiry (2025). https://doi.org/10.1007/s11673-025-10438-3

Elin Inge, Anna Sarkadi, Antónia Tökés, Georgina Warner, Standard Involvement Is Not Enough: A Mixed Method Study of Enablers and Barriers in Research Meetings with Forced Migrants, Journal of Refugee Studies, Volume 37, Issue 1, March 2024, Pages 157–180, https://doi.org/10.1093/jrs/fead062

Inge E, Pérez-Aronsson A, Ibrahim K, Aljeshy R, Sarkadi A, Warner G. Ameliorating epistemic injustice in practice: Communication strategies in a research project with refugee youth coresearchers. Health Expect. 2024 Feb;27(1):e13926. doi: 10.1111/hex.13926. Epub 2023 Nov 29. PMID: 38031659; PMCID: PMC10726263.

Lampa, E., Sarkadi, A., Osman, F., Kihlbom, U., & Warner, G. (2022). Tracking involvement over time: a longitudinal study of experiences among refugee parents involved as public contributors in health research. International Journal of Qualitative Studies on Health and Well-Being, 17(1). https://doi.org/10.1080/17482631.2022.2103137

Contact

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