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

TL;DR

This study evaluates how a patient support group helped women affected by cervical cancer in Ireland and influenced healthcare improvements.

Contribution

The study provides a case example of patient advocacy in action and offers transferable insights for healthcare reform.

Findings

221+ provided valuable support and advocacy for affected women and families.

The group highlighted the need for sustainability and integration with healthcare systems.

The research offers strategies for improving patient-centred care and healthcare reform.

Abstract

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.

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.

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.

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.

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.

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.

In 2018, systemic failures in Ireland’s CervicalCheck screening programme were brought to light following Vicky Phelan’s court case in April 2018. As a result, the 221+ patient support group was established to provide information, advice and support to the 221+ women and families directly affected. The present research was undertaken to evaluate the extent to which the 221+ patient support group has achieved its aims and, in doing so, influenced healthcare delivery in Ireland. To this end, fifteen stakeholders, from various statutory and voluntary sectors were interviewed, and 86 medical and health professionals on the gynaecological health patient pathway completed an online survey. Key findings indicated that 221+ provided a supportive service and was a positive advocate for women and women’s healthcare, while also highlighting key areas for learning and future development. The research provides insights into how 221+ and other patient representative groups might move forward in supporting women’s health and health services.

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