Public dialogue on scanning and surgical innovations in pregnancy​

What is the public engagement project?

The Public Dialogue on Scanning and Surgical Innovations in Pregnancy took place in March and April 2021.

Over the course of two waves of invite-only online workshops, members of the public shared their views, hopes and fears regarding novel technologies that could help improve the diagnosis and treatment of conditions babies may develop in the womb, known as a public dialogue.

Context

Researchers in our Centre are developing a number of technologies that could help improve the diagnosis and treatment of conditions that some babies develop while in the womb. These technologies have the potential to improve outcomes but could also impact the experience of families in this situation and lead to a change in the way they are cared for. We wanted to talk to members of the public, to understand their thoughts on these developments.

The Research

The basis of this public dialogue project explored the ongoing research from two Wellcome Trust-funded projects co-located in the Centre that use advanced medical imaging:

  • intelligent Fetal Imaging and Diagnosis, or iFIND, aims to improve screening and diagnosis of fetal conditions in the womb. The research seeks to improve the accuracy of routine 18-20 week screening in pregnancy, by bringing together advanced ultrasound and magnetic resonance imaging (MRI) techniques, robotics and computer aided diagnostics. By detecting more anomalies before birth, the research hopes to provide better information to parents and their doctors, and allow babies to get access to the care they need as soon as possible after they are born. The team are a group of researchers and clinicians from Kings College London, St Thomas’ Hospital, Imperial College London, the University of Firenze (Florence, Italy), the Hospital for Sick Children (Toronto, Canada) and Philips Healthcare.
  • Guided Instrumentation for Fetal Therapy and Surgery, or GIFT-Surg, aims to develop surgical interventions to treat specific fetal conditions in the womb. It is an international research project developing the technology, tools and training necessary to make fetal surgery a viable possibility. The project focuses on the treatment of congenital birth defects such as spina bifida, twin-to-twin transfusion syndrome and congenital diaphragmatic hernia. The project is a collaboration between King’s College London, University College London and Katholieke Universiteit Leuven, as well as clinical partners Great Ormond Street Hospital, University College London Hospital NHS Foundation Trust and UZ Leuven.

Public Participants

The dialogue workshops were with a carefully selected group of participants, specifically, parents who had experienced a pregnancy of a baby with a condition that was diagnosed in the womb (recruited through charities) and parents who had not (recruited through an Agency), and discussions were chaired by trained facilitators. The findings from the discussions were incorporated into an anonymised report that was shared with leaders in the field.

Parents’ views (i.e., those with lived experience) on these technologies will help to influence future research and innovations in scanning and surgery during pregnancy in the UK and, ultimately, will shape the experience of expectant parents in the future.

We worked closely with a number of charities, building on existing partnerships and creating new partnerships. They provided key advice on language, materials and support to put in place, as well as helping to recruit participants.

Objectives

  1. Understanding different aspects of public acceptability regarding the iFIND and GIFT-Surg projects, including:
    • Screening: ultrasound developments including AI/machine learning
    • Diagnosis: imaging technologies (including MRI)
    • Surgical: developments and other interventions

    Plus associated data gathering and future usage, post-diagnostic support, language and presentation.

  2. Identifying questions and issues to inform future research applications
  3. Build understanding of engagement for project researchers. Utilise a multi-stakeholder advisory group as a means to ensure balance and ownership of the dialogue materials and outputs

Training for our researchers

  1. February 2019 : Engagement workshop, to bring research teams together and explore interest in pursuing a public dialogue
  2. December 2020: Webinar for researchers and clinicians working on iFIND and GIFT-Surg projects. To provide an overview of the dialogue process and to meet the core team​
  3. March 2021: Language-sensitivity training delivered by Antenatal Results & Choices (ARC) charity. The aim of this session was to develop researchers’ confidence and competence on communicating around sensitive issues in antenatal care/pregnancy.

The project had a Stakeholder Advisory Group (StAG) which acted as a sounding board for the project, providing a range of views on the process and materials used with the public. It ensured balance and ownership of the dialogue.

There were clinicians and researchers from both iFIND and GIFT-Surg projects on the StAG, as well as external specialists such as an ethicist, charity leads and an NHS representative.


Outputs

  • Accessible stimulus material on research
  • Discussions at the workshops were recorded, analysed and collated to create a report that has been reviewed and shared with clinicians, charities, researchers and industry professionals.

Outcomes

  • Used insights to make recommendations to consider what changes could usefully be made to scanning and surgery during pregnancy in future research & clinical practice
  • Built researchers’ skills (e.g., confidence, communication, interpersonal)
  • Improved public understanding and trust in research

Impact

  • Adoption of recommendations
  • Shaping future research

Stimulus Video Materials

Stimulus materials were developed (in the form of short films) and provided to public participants during the dialogue workshops, and to watch after in their own time, to explain the research. (The NHS video ‘Screening for You and Your Baby’ was also shown to understand the current screening process in England).


Dissemination Event

Following completion of the public dialogue around scanning and surgical innovations in pregnancy, the project delivery team hosted an online dissemination event on Thursday 15th July 2021.

The event sought to:

  • Provide an overview of what a public dialogue is, how it can add value and have impact on research 
  • Provide an overview of the whole project from inception to reporting; including planning, recruitment, process design, findings and learning/reflections from those involved
  • Share key findings from the dialogue discussions and launch the final report

It was primarily aimed at researchers, public engagement/ impact professionals and those associated with the project.


Reporting

In this video, researchers and members of the public share their experiences following the dialogue workshops.

 

Download the report Executive Summary.

Download the full Dialogue Report.



This public dialogue is overseen by the Public Engagement team at the Centre for Medical Engineering, King’s College London.


Supported by specialist consultants 3KQ who are independently designing, managing and reporting on the dialogue.


Ursus is the external evaluator, to assess robustness, credibility, diversity of voices, balanced stimulus material as well as measuring the impact on researchers and clinicians involved.


The project is funded by the Wellcome Trust, which is a charity that funds scientific research.