Public engagement

Engaging with Patients

Overview: Involving patients in designing research pathways helps to achieve successful outcomes and is an important aspect of our research. The group engages with the public and patients in the following ways:

Identifying patient priorities for research
Discussing ethical issues relating to developing prenatal therapy
Understanding issues of informed consent relating to trials of prenatal therapy
Collaborating with patients to develop new ways to image and treat the fetus in the womb

Team: Preterm Birth

Anna David and Catherine James are members of the steering group for the Preterm Birth Priority Setting Partnership, James Lind Alliance. In conjunction with families with experience of preterm birth and organisations representing them we identified and prioritised the top 15 research questions of which the top is “Which interventions are most effective to predict or prevent preterm birth?”

Team: Prenatal Imaging and Surgery

The Patient Public Advisory Group for GIFT-Surg was set up as part of a 7 year programme grant funded by a Wellcome Trust and EPSRC Innovative Engineering for Health Award. The group has parents and representatives from a number of UK charities (SHINE; CDH-UK; BLISS; TAMBA; ARC) who are providing continuous input to the project during the development of innovations.

Team: Maternal Gene Therapy for Fetal Growth Restriction

As part of the 6 year EVERREST programme, we consulted with patients who had experienced a pregnancy with severe early onset fetal growth restriction to understand their views about developing a treatment. The overall conclusion drawn from these interviews was that they had a generally favourable view of the ethical and social acceptability of a maternal gene therapy to treat this condition

Team: Prenatal Treatment of Congenital Disease

We are working with groups such as the UK Thalassaemia Society and The Sickle Cell Society to develop new treatments for these common blood disorders and to inform them of our work.