Evaluating the impact of a patient-representative model of support for women affected by cervical cancer

Background: In the aftermath of high-profile healthcare system failures, patient representative groups can emerge as key contributors to support, reform, and accountability. Following the identification of failures in Ireland’s CervicalCheck screening programme in 2018, the 221+ Patient Representative Group (commonly known as 221+) was established to support affected women and families. Objectives: The present research aimed to assess the impact of the 221+ group and associated patient representatives in supporting women and influencing the delivery of healthcare. Design: An independent research team conducted a two-phase qualitative study, gathering perspectives from a range of stakeholders involved in statutory, non-statutory, and voluntary healthcare sectors in Ireland. Method: Interview data collected from key stakeholders (phase 1, N=15) and qualitative survey responses from medical and healthcare professionals (phase 2, N=86) were analysed separately using reflexive thematic analysis. Results: Findings support the value of a patient-representative model in providing support and advocacy for women affected by cervical cancer and their families, while also highlighting important considerations such as sustainability, integration with healthcare systems, and the need for inclusive representation. Conclusion: This study provides a case example of patient advocacy in action, offering transferable insights and strategies to inform patient-centred care and healthcare reform in other settings.