Congenital Heart Disease Priority Setting Partnership

Stage 1: Establishing the partnership

Using the methodology established by the James Lind Alliance, the Congenital Heart Disease PSP is seeking to identify and prioritise evidence uncertainties or ‘unanswered questions’ relating to the management of congenital heart disease in the UK. We therefore established a steering committee of parents, adult patients, national charities, and clinicians from across the UK and have engaged with a wide range of partner organisations to raise awareness of the PSP through their members and supporters.

Stage 2: Initial survey 

The initial survey sought to identify evidence uncertainties through a consultation process with all stakeholders, and asked one simple question: What questions would you like to see answered by research, relating to the diagnosis, treatment, or outcomes of congenital heart disease?

The survey was available online and in PDF format from June-October 2021 and was widely promoted via social media, partner mailing lists, and newsletters.

The steering committee specifically identified South Asian communities as being disproportionately affected by congenital heart disease and experiencing worse outcomes from interventions, whilst being underrepresented in consultations. With input from the Centre for BME Health, the PDF survey was available in Bengali, Urdu, Gujarati, and Hindi, in addition to English, Welsh and Polish.

Stage 3: Evidence checking

The survey responses were analysed, removing any out-of-scope questions and those already answered in the literature, to generate a long-list of unanswered but answerable summary questions.

These were split into two parallel tracks depending on whether they relate to children/antenatal care and/or adults with CHD.

Stage 4: Prioritisation surveys - we want to hear from you (again)!

Two follow-up surveys to prioritise the identified uncertainties are now open and can be completed online: the Paediatric/fetal prioritisation survey and the Adult prioritisation survey. 

Respondents are asked to rank the unanswered summary questions and the most highly ranked questions in each track will be taken forward to the workshops.

Stage 5: Priority setting workshops

Two workshops will be held, one fetal/paediatric and one adult, facilitated by the James Lind Alliance. Up to 25 patients, parents, charities and healthcare professionals will be invited to each workshop for a day of discussion and ranking, to determine the top 10 questions for research in each track.

Post-PSP: Developing a national strategy for congenital heart disease research

After completion of the PSP, we will engage with partners and funders to disseminate our findings. We will continue to work with stakeholders to develop a national strategy for congenital heart disease research and to implement this strategy through multi-centre clinical trials and other studies to improve the clinical care and day-to-day lives of children and adults born with congenital heart disease.

Julie Wootton, Parent and Chair of the Children’s Heart Federation

Julie is chair of trustees for Max Appeal, for people with 22q11DS, which she established following the death of her son in 1999. She is chair of trustees of the Children’s Heart Federation, a trustee of CCP-UK, the patient arm of the British Cardiovascular Society, and Genetic Alliance UK. 

Michael Cumper, Patient and President, Somerville Heart Foundation

Michael Cumper is President and a Trustee of the Somerville Heart Foundation. Prior to becoming President, he was Vice President and Chairman of the charity for many years. He is a patient with congenital heart disease and has represented the Somerville Heart Foundation on a number of committees including being a member of the NHS Standards Group that wrote the Standards for the care of adults with congenital heart disease for England. He is an outspoken advocate for the patients.

Jara Weinkauf, patient with congenital heart disease

Jara was born with a severe congenital heart defect called Tricuspid Atresia. After multiple openheart surgeries, she knows first-hand, how difficult it can be to navigate all things surgery, doctor visits, keeping a positive spirit, and most of all staying independent and active. She is eager to contribute the experience  gained growing up with a heart condition and hopes to make life easier for fellow cardiac patients. 

Fraser Pender, patient with congenital heart disease

Fraser is an adult patient with congenital heart disease, born with transposition of the great arteries. He underwent a ’switch’ procedure as a newborn and a balloon septostomy at 1 years of age. Although he leads a healthy and sporty lifestyle, he has to undergo yearly medical examinations and will require a heart valve replacement in the future. 

Sarah Murray, Parent and Chair of the BHF Clinical Research Collaborative Cardiac Surgery PPI group

Sarah is the chair of the National Cardiac Surgery Clinical Trials Initiative PPI Group, and is also the mother of a son with a congenital heart defect. She is passionate about finding answers to some of the fundamental questions patients ask.

Alex Miskin, Parent of child with congenital heart disease

Alex is passionate about improving the treatment and research into Congenital Heart Disease as the Mother of Evie Miskin who was born with the congenital heart condition, Truncus Arteriosus. Evie has undergone heart surgery to separate her aorta and pulmonary artery. This surgery happens every few years as she has grown or the conduit requires replacement. Along side these interventions she has had many catheter procedures and has had stents fitted due to the narrowing of her arteries, all under the care of the fantastic team at Birmingham Children’s Hospital, which has allowed her to thrive.

Sasha Rooprai, Parent of child with congenital heart disease 

Sasha is parent of a child with a heart condition called complete heart block (at stage 3) She is passionate about creating awareness of heart disease through different projects. She is also a friend of the ‘ Young at Heart Charity.’

Mr Nigel Drury, Clinician Scientist and Consultant in Paediatric Cardiac Surgery, Birmingham Children's Hospital and PSP National Lead

Mr Nigel Drury is Consultant in Paediatric Cardiac Surgery at Birmingham Children’s Hospital, and Clinician Scientist and BHF Intermediate Clinical Research Fellow at the University of Birmingham. He is Chief Investigator of the only two multi-centre randomised clinical trials in children’s heart surgery in the UK (BRICC, DESTINY). 

Prof John Simpson, Consultant Paediatric and Fetal Cardiologist, Evelina London Children’s Hospital, and President, British Congenital Cardiac Association (BCCA).

Professor John Simpson studied medicine at the University of Edinburgh. He trained in children's and fetal cardiology at Guy’s Hospital, London and at the University of California, San Francisco, USA. He has been a consultant at Evelina London Children’s Hospital since 1999 and leads the echocardiography service. He is interested in the use of advanced imaging of congenital heart disease during fetal life, including 3D imaging of the heart.

Dr Katherine Brown, Consultant in Cardiac Paediatric Intensive Care, Great Ormond Street Hospital, London

Katherine Brown is consultant in Paediatric Cardiac Intensive Care at Great Ormond Street Hospital and Associate Professor and Lead for Children’s Heart Diseases Research at UCL Institute of Cardiovascular Science at Great Ormond Street Hospital. Katherine has an interest in health services research related to: registry or population based analyses for paediatric cardiac surgery and congenital heart disease, and longer term disease impacts such as morbidities, psychosocial or neurodevelopmental outcomes and quality of life.  

Dr John Thomson, Consultant Interventional Cardiologist, Leeds Teaching Hospitals

John is an experienced interventional cardiologist working in the field of congenital heart disease. His unit is large and he has performed many thousands of catheter procedures on children and adults in a variety of clinical settings. 

Mr Rafael Guerrero, Chief of Congenital Cardiac Surgery, Alder Hey Children’s Hospital, Liverpool, and Chair, Congenital Cardiac Surgery sub-committee, SCTS

Rafael is an international leader in Paediatric and Adult Congenital Cardiac Surgery, as well as a trainer, innovator and advocate and promoter of the use of advanced technology in healthcare. He is Chief of Congenital Cardiac Surgery and Director of Cardiac Services at Alder Hey Children’s Hospital, and an Honorary Professor at the University of Liverpool. He is also co-founder of the award-winning Alder Hey Innovation Centre and as the Director of Innovation has been instrumental in establishing the vision and long-term strategy. He is the current Chair of the Congenital Committee of the Society for Cardiothoracic Surgery.

Dr Louise Coats, Consultant Adult Congenital Cardiologist, Freeman Hospital, Newcastle 

Dr Louise Coats is an Adult Congenital Cardiologist at the Freeman Hospital, Newcastle upon Tyne and Adult Lead for the North East and North Cumbria Congenital Heart Disease Network. She leads the Congenital Heart Disease Research Group, with sits as part of the Reproduction, Development and Child Health Theme at Newcastle University. She is interested in outcomes for adults with congenital heart disease, in particular understanding what matter to patients, how this should inform care provision and how we better detect problems early.

Dr Clare Herd, Information Specialist, Institute of Applied Health Research, University of Birmingham

Clare has worked for the last ten years as an information specialist and systematic reviewer. Most of her work has used Cochrane methods to produce comprehensive reviews of interventions for a variety of conditions. 

Dr Giovanni Biglino, Senior Lecturer in Cardiovascular Bioinformatics, University of Bristol

Giovanni is a bioengineer with an interest for interdisciplinary research and patient and public engagement and involvement in research. He is currently Senior Lecturer in Biostatistics at the Bristol Medical School, Honorary Clinical Senior Lecturer at Imperial College London and a Future Leader in Innovation Enterprise and Research (FLIER) at the Academy of Medical Sciences.

Sharmaine Afferion, Administrator, Institute of Cardiovascular Sciences, University of Birmingham 

Sharmaine has worked at the Institute of Cardiovascular Sciences for 4 years. She is involved in all the social media aspects of the PSP.

Katherine Cowan, Senior JLA Advisor and Chair of the Steering Group

Katherine is Senior Adviser to the James Lind Alliance (JLA) and is chair of the Congenital Heart Disease Priority Setting Partnership (PSP) Steering Group. She has been a key contributor to the development of the JLA method.