Congenital Heart Disease Priority Setting Partnership

Two hands completing a jigsaw puzzle of a heart

Congenital heart disease is the most common type of birth defect, affecting 12 children born every day in UK, with many requiring one or more open heart operations or interventions.

In recent years, outcomes have continued to improve and nowadays around 97% of children born with congenital heart disease are expected to survive into adulthood. However many develop late complications related to their condition or previous surgery/interventions and almost all require life-long follow-up.

The James Lind Alliance is a national non-profit making initiative established in 2004 to bring together patients, carers and clinicians as a priority setting partnership (PSP), to identify and prioritise evidence uncertainties or ‘unanswered questions’. This process is used to generates Top 10 lists of unanswered questions and provide a platform for funders to prioritise the research that matters most.

The Partnership

The Congenital Heart Disease Priority Setting Partnership is bringing together parents, adult patients, charities, and clinicians from across both the spectrum of congenital heart disease and the UK to identify priorities for research. It is a collaboration between the Children’s Heart FederationThe Somerville Foundation, the British Congenital Cardiac Association, and the Society for Cardiothoracic Surgery, and is being hosted by the Institute for Cardiovascular Sciences at the University of Birmingham. It is funded by George Davies, the high street fashion entrepreneur behind brands such as Next, Per Una, and George at Asda, through a generous donation to the Birmingham Children’s Hospital Charity from the George Davies Charitable Trust.

The scope of this PSP is focused on the management of congenital heart disease throughout life, including prior to birth, in three areas of the patient and families experience:

  • Diagnosis, during pregnancy or after birth.
  • Treatment: medical therapy, catheter intervention, surgery including mechanical support & transplantation, lifestyle, or psychosocial intervention.
  • Outcomes of the conditions and/or treatments and the impact on patients and their families, including the physical, psychological, and social effects of living with congenital heart disease.

We are not looking at areas which fall outside of these, such as the causes of congenital heart defects, acquired heart disease in those without a congenital heart defect, or aspects of congenital disorders that do not affect the heart.

The survey is now open and can be completed online or is available to download as a PDF in English, Welsh, Polish, Bengali, Urdu, Gujarati, and Hindi. 

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This PSP will generate two Top 10 lists, one fetal/paediatric and one adult. These will be key in developing a national strategy for congenital heart disease research to address the issues which matter most, and will guide the scope and design of future clinical trials aimed at improving the clinical care and day-to-day lives of children and adults born with congenital heart disease. 

The PSP process

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 have 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.

 

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Stage 2: Initial survey — we want to hear from you! 

The initial survey seeks to identify evidence uncertainties through a consultation process with all stakeholders, and asks 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 is available online and in PDF format which can be printed and completed, and is being promoted via social media, partner mailing lists, and newsletters to reach a wide audience.

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 is available in Bengali, Urdu, Gujarati, and Hindi in addition to English, Welsh and Polish.

 

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Stage 3: Evidence checking

All of the survey responses and any additional questions obtained via social media will be analysed. We will refine the questions and uncertainties, remove any out-of-scope questions and those already answered in the literature, to generate a long-list of unanswered but answerable questions.

These will be split into two parallel tracks depending on whether they relate to the fetus/child or the adult; uncertainties concerning transfer of care could be included in either track.

 

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Stage 4: Prioritisation surveys

Two follow-up surveys will be conducted, seeking to prioritise the identified uncertainties in both the fetal/paediatric and adult tracks. Respondents will be asked to rank the unanswered questions and the most highly ranked questions in each track will be taken forward to the workshops.

 

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Stage 5: Priority setting workshops

Two workshops will be held, one fetal/paediatric and one adult, facilitated by the James Lind Alliance. Up to 30 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.

 

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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.

 

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Our partners

The Congenital Heart Disease PSP is being conducted through the Institute of Cardiovascular Sciences at the University of Birmingham, in conjunction with Birmingham Children’s Hospital Charity, and overseen by the James Lind Alliance.

Key partner organisations:


  • Children’s Heart Federation
  • The Somerville Foundation
  • British Congenital Cardiac Association (BCCA)
  • Society for Cardiothoracic Surgery in Great Britain and Ireland (SCTS)

Other partner organisations:


  • Little Hearts Matter
  • Tiny Tickers
  • Max Appeal
  • Birmingham Children’s Hospital Charity 
  • Young at Heart
  • Paediatric Critical Care Society (PCCS)
  • Congenital Cardiac Anaesthesia Network (CCAN)
  • Paediatricians with Expertise in Cardiology Specialist Interest Group (PECSIG)
  • Society of Clinical Perfusion Scientists (SCPS)
  • Congenital Cardiac Nurses Association (CCNA)
  • British Adult Congenital Cardiac Nurse Association (BACCNA)
  • Centre for BME Health at the University of Leicester

The Steering Group

The Congenital Heart Disease PSP is being overseen by a steering group comprised of parents, adult patients, national charities, paediatric and adult cardiologists, congenital cardiac surgeons, and a paediatric cardiac intensivist, along with two information specialists, supported by an administrator and chaired by a Senior Advisor from the James Lind Alliance.

Patient and carer representatives:

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. 

Julie Wooton

Michael Cumper, Patient and Vice President, The Somerville Foundation

Michael Cumper is Vice President and a Trustee of the Somerville Foundation. Prior to becoming Vice President he was Chairman of the charity for 10 years. He is a patient with congenital heart disease. Hehas represented The Somerville 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.

Michael Cumper

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. 

Jara

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. 

Frazer Pender

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.

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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.

Alex Miskin

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.’

Sasha Rooprai

Clinical representatives:

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). 

Nigel Drury 2019 - 1

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.

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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.  

Katherine Brown

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. 

John Thompson

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.

Rafael

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.

Louise Coats

Other members:

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. 

Clare Herd

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.

Giovanni Biglino

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.

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James Lind Alliance:

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.

Katherine Cowan

 

Contact details

 

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