International journal of population data science · 2025
Co-producing data-intensive research with an underserved group: a case study and evaluation identifying pathways to impact.
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McKenna Sarah, Salem Ash, Ibrahim Esla, Brown Rhianna, McCallin Martha, Kilpatrick Brenda, Irvine Jo, Kane Lee, Nelson Elizabeth, Maguire Aideen
Аннотация
INTRODUCTION: Co-production of research, where researchers and experts by experience work as equal partners throughout a research project, can improve the quality, relevance, implementation and impact of research. However, there is limited evidence on methods for successful co-production in data-intensive research with underserved groups. In partnership with the charity Voice of Young People in Care (VOYPIC) and a group of care experienced young people, the Administrative Data Research Centre Northern Ireland (ADRC NI) piloted and evaluated a co-production approach in a research project that used linked administrative data to examine the association between care experience and mental ill health and mortality.
OBJECTIVE: The aim of this paper is to report the impact of co-production using the pilot as a case study, and assess the mechanisms involved against published principles of co-production. Additionally, we consider if co-production in this context is a special case that warrants bespoke guidance.
METHODS: Two participatory workshops and three semi-structured 1-1 interviews were conducted to collect the perspectives of pilot participants. Deductive thematic analysis was used to sort data into three predetermined categories: 1) impact; 2) barriers; and 3) enablers. To formally assess pathways to implementing co-production and achieving impact, mechanisms were mapped against the five National Institute for Health and Care Research (NIHR) principles of co-production.
RESULTS: Positive impacts were identified for individuals, the research and organisations involved. Common barriers to co-production, like representativeness and resource constraints were identified, alongside challenges specific to data-intensive research, such as balancing power-sharing with data access constraints. Key enablers included genuine power sharing, valuing diverse knowledge, and partnership working. Special considerations needed to support successful co-production in this context include extra effort to achieve inclusion and address support needs. Partnerships with voluntary and community organisations support an inclusive, trauma-informed approach.
CONCLUSION: This case study and evaluation can be utilised to support co-production with underserved groups in other data-intensive research contexts. Embedding co-production of data research with underserved groups will require changes to the broader research eco-system, including tailored guidance and resources, and funding partnerships rather than only pre-specified research projects.
OBJECTIVE: The aim of this paper is to report the impact of co-production using the pilot as a case study, and assess the mechanisms involved against published principles of co-production. Additionally, we consider if co-production in this context is a special case that warrants bespoke guidance.
METHODS: Two participatory workshops and three semi-structured 1-1 interviews were conducted to collect the perspectives of pilot participants. Deductive thematic analysis was used to sort data into three predetermined categories: 1) impact; 2) barriers; and 3) enablers. To formally assess pathways to implementing co-production and achieving impact, mechanisms were mapped against the five National Institute for Health and Care Research (NIHR) principles of co-production.
RESULTS: Positive impacts were identified for individuals, the research and organisations involved. Common barriers to co-production, like representativeness and resource constraints were identified, alongside challenges specific to data-intensive research, such as balancing power-sharing with data access constraints. Key enablers included genuine power sharing, valuing diverse knowledge, and partnership working. Special considerations needed to support successful co-production in this context include extra effort to achieve inclusion and address support needs. Partnerships with voluntary and community organisations support an inclusive, trauma-informed approach.
CONCLUSION: This case study and evaluation can be utilised to support co-production with underserved groups in other data-intensive research contexts. Embedding co-production of data research with underserved groups will require changes to the broader research eco-system, including tailored guidance and resources, and funding partnerships rather than only pre-specified research projects.