Research agenda setting with service users and health care professionals: A case study of the James Lind Alliance preterm birth priority setting partnership

Uhm, Seilin S (2025) Research agenda setting with service users and health care professionals: A case study of the James Lind Alliance preterm birth priority setting partnership. Doctoral Thesis, 368pp.

Record type: Thesis (Doctoral)

Abstract

This thesis examines the dynamics between service users and health care professionals collaborating to set research priorities for preterm birth, recognising that health research does not always align with the most pressing questions for these different stakeholder groups. Using a mixed-methods approach, the study thoroughly investigates the balance between the technical complexity and emotional intensity that is characteristic of preterm birth. By qualitative analyses of stakeholder discussions with quantitative assessments of priority-setting outcomes, the research elucidates the sophisticated interplay between technical information and emotional considerations navigated by participants. The investigation highlights the imperative of uniting service users and clinicians to identify uncertainties, verify their congruence with existing research, and comprehend the nuances of interaction in collective decision-making. It delves into stakeholders’ participation in the research agenda setting, particularly emphasising the importance of research that could yield modest improvements in the care and treatment. The study uncovers significant discrepancies between the priorities of service users and health care professionals, highlighting divergent views on what constitutes the most pressing research needs. Furthermore, it reveals a considerable gap between these identified priorities and the existing body of evidence, underscoring the urgent need for research that bridges these disparities and more accurately reflects the needs of those impacted by preterm birth. Additionally, the application of the Elaboration Likelihood Model (ELM) for communication analysis suggests a predilection for evidence-based arguments over emotional appeals, advocating for informed dialogue in consensus achievement. Addressing challenges in inclusivity, especially the engagement of underrepresented groups, the thesis emphasises the importance of wide participation in the research prioritisation process. By contributing to the discourse on patient and public involvement in health research, this work sheds light on the complexities of consensus-building among diverse stakeholders, highlighting the critical need for effective communication, bridging research gaps, and fostering inclusive participation in setting research priorities. These insights carry significant implications for future collaborative research efforts, particularly in areas as technically and emotionally complex as preterm birth research.

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