Patient and Public Advisory Group
About the Patient and Public Advisory Group
Since its founding in 2015, the GIFT-Surg Patient and Public Advisory Group (PPIAG) have met quarterly to discuss areas of research across the wider project and feed in patient views and perspectives to how we develop, design and disseminate research.
The group brings together patient representation from charities representing the five main application areas of the GIFT-Surg project. It has a consistent membership that have built up a supportive and open group together with a core research team and range of speakers from across the project. At each meeting, members discuss and shape research to be around the needs and reality of patients.
The group’s outputs have fed into the project at all stages, contributing to project design and scope, development of research frameworks and engineering outputs, through to how we present work in patient information and videos describing our research. The PPIAG is led by Professor Anna David, with support from an organising team made up of Dr Nada Mufti, Dr Brian Dromey, Dr Andrew Melbourne and Dan Taylor, Public Engagement and Patient Involvement Manager.
Members include representatives from:
The charity for babies born premature or sick
The congenital diaphragmatic hernia support charity
Spina bifida and hydrocephalus information, networking and equality
Antenatal Results and Choices – the charity offering non-directive information and support through antenatal testing
The charity supporting the parents of twins, triplets and more
Key Outputs
Since 2015, the group has been involved in the development of a wide range of outputs, formed through joint conversations..
These outputs included:
- Development of an ethical framework for fetal surgery
- Contribution to the development of new Adverse Event categories in relation to pregnancy interventions which have now been adopted by the Medical Dictionary for Regulatory Activities (MedDRA) for use in clinical trials
- Creation of three patient-friendly research animations about spina bifida, twin-to-twin transfusion syndrome and congenital diaphragmatic hernia, describing key aspects of the project collaboration between researchers and patient representatives
- Identified a gap in clinical service: the need for an information sheet about fetal MRI. The PPIAG helped draft and review the sheet to allow swift implementation into practice.
- Creation of a patient friendly patient information leaflet for women undergoing fetal surgery for spina bifida
- Contributing to the design of ethics documentation and patient information throughout the project scope, with over 12 of these documents shaped by the group’s feedback
In 2019, we conducted a mid-point evaluation review with the Manchester NHS Public Programmes team, creating a report summarising major outputs, achievements and learning. These are currently being developed into an external document and research paper.