A report published by 221+ and the National Screening Service (NSS), which includes recommendations for audit and disclosure processes, highlights the central role the patient support group played in the development of our personal cervical screening reviews - a supportive process for screening participants who subsequently develop cervical cancer.
We wanted to learn from the experience of women in the 221+ group who were affected by the CervicalCheck audit and developed the consultation in partnership with patient representatives from the group, to capture their views and recommendations for change. The women of 221+ shared their experiences, opinions and thoughts about what changes were needed to improve future processes of cervical cancer audit and disclosure.
A small co-design engagement group with four 221+ members, the 221+ coordinator, two NSS staff and an external facilitator was formed to co-design the consultation and research process. The main objectives of the consultation were to:
- capture and document the lived experience of members of 221+ directly affected by the CervicalCheck audit and disclosure processes
- formulate person-centred recommendations for the NSS that prioritise women’s wellbeing and aim to improve the future experience for screening participants who go on to be diagnosed with cervical cancer.
Research included qualitative in-depth interviews with 221+ members and a quantitative online survey sent to all members of the group. Five people participated in the interviews and 24 completed questionnaires were returned. The engagement group felt the research was representative of people’s experiences overall.
The main findings identified a clear need for future improvement in each step of the patient journey and resulted in detailed recommendations to improve the information and supports provided to people going through a review process. The following principles were identified as core considerations to be applied throughout the personal cervical screening review process with the aim of improving patient experience and transparency:
- Empowerment and respect through transparency and choice
- Empathy, personal contact and care
- Structure, organisation and clarity.