Research

The National context

High quality research and academic activity is an essential component of a well-functioning specialist CHD centre and is a way to constantly improve healthcare delivery and provide better care for patients. Patients are at the heart of what we do.

The national transforming collaborative research strategy was published in July 2023, by The University of Birmingham. This is a national strategy to address the 2022 James Lind Alliance (JLA) clinical priorities identified for children and adults with CHD, with endorsement from the British Congenital Cardiac Association and national charity partners including the Children’s Heart Federation and the Somerville Heart Foundation. It aims to provide a structure through which the priorities can be translated into funded collaborative research studies, to improve clinical care and the lives of those affected by CHD.

The plan aligns with national policy documents including the NHS Long Term Plan (2019). It is supported by the NHS England CHD Clinical Reference Group and the Women’s and Children’s Programme of Care. It also reflects the NHS England standards and specifications (2016) requirement for all CHD Network specialist centres to participate in research activity in partnership with other centres to improve patient care. For further information on the requirements in the standards please see Section G of the document in the relevant part of the document (Level 1, 2 or 3; adult or paediatric).

There are 3 components of the national research strategy:

1. To establish a UK and Ireland collaborative network for multi-centre studies, focusing on clinical trials and other studies that address the priorities and have the potential to change clinical practice.
2. To set up a national CHD patient and public involvement (PPI) group, comprising of engaged patient, parent and charity members with lived experience or affected by CHD, to actively contribute through all stages of the design, conduct and reporting of research.
3. To develop national working groups to address each of the priorities, comprising clinicians, researchers, and PPI members, and overseen by the network. For example, groups looking at new advances and reducing re-interventions. 

There are two Top 10 lists of priorities for CHD research, one child/antenatal and one adult. Six of the priorities were present on both lists reflecting the lifelong care.   

The South Wales and South West CHD Network has been showcased nationally as an example of one of the only CHD Networks to currently have a Research Lead. The intention is to have research champions in all Networks across the UK.

Research in our South Wales and South West CHD Network

Research is active and thriving in the South West and South Wales CHD Network, and it is important to share this so all are aware of the latest developments. Network members have published a large range of scientific papers in high quality peer reviewed journals. One of our main contributors is Massimo Caputo, Professor of Congenital Heart Surgery and Consultant in Cardiothoracic Surgery, who is based in Bristol and was re-awarded the Chair of the British Heart Foundation (until 2027).  Millions of pounds have been raised in research funds in the region and there are active research groups working in for example exercise physiology, pregnancy, cardiac surgery and interventions.

The Network’s primary research partner, the University of Bristol, is one of the UK’s leading teaching and research universities. Clinical studies are carried out at the National Institute for Health and Care Research Bristol Clinical Research Facility and are supported by dedicated research staff. 

The Congenital Heart Disease Network teams engage in a range of teaching and training activities aimed at developing, maintaining and overseeing the development of Network staff. Activities are run in a collaborative way at specialist centres in Bristol and Cardiff with the support of other clinicians in supporting our Network hospitals.

Our Research Lead in the South Wales and South West CHD Network

Dr Giovanni Biglino was appointed as Research Lead for our Network in 2023. By background, Giovanni is a biomedical engineer with an interest in a multidisciplinary approach to health and currently Associate Professor of Bioengineering at the Bristol Medical School. He has been researching congenital heart disease since 2010 and works collaboratively with others in this field including Professor Massimo Caputo.    

Giovanni’s research is focused on experimental and computational modelling of congenital heart disease. With invaluable support from The Grand Appeal (one of Bristol Royal Hospital for Children’s charities), he established the 3D printing and bioprinting lab currently in the Bristol Heart Institute. Some of his research has looked at different applications of 3D models, including to support communication in the clinical setting and to promote patient engagement. He is exploring how to combine technologies and creative practices to represent health and disease in new ways.

We are grateful to Giovanni Biglino for taking on this voluntary role and are excited to work with him to enhance and share research and academic activity across our region, nationally and internationally.

Research meetings

Research updates are on the agenda for the bi-annual Regional Network Clinical Governance Group (the meeting dates are published on the Network Board page).  This is a great opportunity for healthcare professionals across the region to hear more about the latest research in the Network. The Network also has a research portal for members to log publications.

Dr Giovanni Biglino recently launched an online research forum. The forum is open to all Network members with an interest in research, regardless of experience. Journal clubs also are held across the Network for clinical teams.

If you have any comments on this section of the website or would like to suggest further information to include, please contact:  michelle.jarvis@uhbw.nhs.uk.