This project is being led by patients, clinicians, researchers and policymakers from across the UK and JLA advisors.
Professor Lis Neubeck
Edinburgh Napier University
Professor Susan Dawkes
Robert Gordon University
Associate Professor Alistair Lawson
Edinburgh Napier University
Dr Coral Hanson
Edinburgh Napier University
Dr Nicola Straiton
St Vincent’s Health Network
Edinburgh Napier University
Dr Simon Nichols
Robert Gordon University
Steering Committee Members
Amitava Banerjee is Professor in Clinical Data Science at University College London, and Honorary Consultant Cardiologist at University College London Hospitals and Barts Health NHS Trusts. Also, he is Vice-President (Digital, Communications and Marketing) of the British Cardiovascular Society and Senior Advisor to the World Heart Federation Emerging Leaders Programme.
Ian is a nurse and academic with over 30 years clinical experience. He leads the Liverpool Centre for Cardiovascular Science at LJMU, a multi-disciplinary, multi stakeholder research organisation that is focussed on the pursuit of high-quality cardiovascular research. He is engaged in numerous external organisations including the British Association for Nursing in Cardiovascular Care, and the Association for Cardiovascular Nurses and Allied Health Professionals of the European Society of Cardiology.Ian has published widely in the field and has successfully managed a large number of funded research projects that have focussed on the needs of cardiac patients and their carers, the end of life needs of heart failure patients and the users’ views of cardiac nurses.
Jill had two SCAD heart attacks in March 2021. Having no cardiac risk markers and working in the Health & Fitness industry for 30 years, heart attacks were a surprise – not least to the healthcare professionals who treated her at every stage of her journey. Through her own research she was able to gain the treatment that she needed. She now works to increase awareness of SCAD and female heart health alongside her job as a Clinical Massage Therapist.
Professor Mills is the British Heart Foundation Chair of Cardiology at the University of Edinburgh and a Consultant Cardiologist at the Royal Infirmary of Edinburgh. His research group uses linked healthcare data to develop new approaches to improve the diagnosis of patients with acute cardiac conditions, and to evaluate their impact in practice.
Richard Mindham was diagnosed with Heart Failure (HF) in 2007 and has since devoted much of his time to improving the breadth of care offered to HF patients and their families, notably in the areas of self-care, education, rehabilitation and psychosocial support.
Richard has been on a number of related task forces and steering committees, most recently for the European Society of Cardiology’s (ESC’s) HF guideline (2019-2021) and NICE’s HF quality standards (2011, 2015, 2022). Richard’s research/registry interests include being the patient member on the IRONMAN trial (2016-2022) and on the NICOR HF audit for England & Wales (since 2011).
Dr Amanda Pitkethly is a lecturer and researcher at Edinburgh Napier University in the psychology of goal-directed behaviour change, including self-efficacy, motivation and self-regulated learning. Amanda leads an accredited MSc programme in Clinical Exercise Physiology and is also an HCPC registered Sport & Exercise Psychologist.
Fiona Strachan is the Chief Operating Officer of the Innovative Healthcare Delivery Programme, a Scottish Government funded programme within the Usher Institute, University of Edinburgh. With a background in nursing and cardiovascular research, Fiona is an experienced healthcare researcher with a particular interest in including user and patient experience in research through co-design and qualitative methods. Fiona brings a knowledge current practice in using healthcare data to drive improvements in health and wellbeing and an understanding of the key factors involved in digital health and innovation.
Jane-Claire is CEO at Chest Heart & Stroke Scotland. She is a board member of Public Health Scotland and Children in Scotland and was previously a Commissioner at the Scottish Human Rights Commission. She holds an MA Hons, an MBA, and a post graduate diploma in Quality in Health Leadership.
Mary is the Cardiovascular Research (CV) Network Manager for NHS Research Scotland. Mary qualified as a Registered General Nurse, and Registered Sick Children’s Nurse in Glasgow. She is a graduate from Caledonian University in Glasgow. Her career has spanned a range of clinical, senior managerial and research management roles in NHS Scotland. She is responsible for managing the CV Research Portfolio in NHS Scotland working in tandem with the CSO Cardiovascular Research Clinical Lead, NHS Boards, University, Charity, and Industry partners.
David McColgan is Head of British Heart Foundation Scotland and responsible for the charity’s operations in Scotland. Prior to taking on the role in November 2022, he had a 14-year multi-award winning career in public affairs. David held roles in the Scottish Government, the Scottish Sports Association, and the Scottish Council and Voluntary Organisation before joining BHF in 2013.
Donna Fitzsimons is the Head of School of Nursing and Midwifery at Queen’s University Belfast. She has experience as a practising nurse and researcher in a range of cardiac conditions. Her work has focussed on using patient experience to enhance practice and care pathways.
Maria is a registered Advanced Nurse Practitioner in Cardiothoracic surgery. She has over twenty-eight years’ experience in acute cardiothoracic and critical care in both private and public hospitals. She is current President of the Irish Nurses Cardiovascular Association (INCA). Maria teaches medical, nursing and physiotherapy students as an Honorary Teaching Associate Royal College Surgeons Ireland (RCSI) and Adjunct Lecturer/Assistant Professor, University City Dublin (UCD). She is a member of the ACNAP Education Committee. She is a committee member of the Irish Association Critical Care Nurses (IACCN) and CONNECT Cardiac Surgery International Nursing and Allied Professional Research Network. She was awarded the FFNMRCSI Fellowship of the Faculty of Nursing and Midwifery RCSI and a Fellowship of the Heart Failure Association (FHFA). Maria is currently a PhD student, having received a scholarship award from UCD.
Rakesh Modi is a GP partner in Cambridgeshire. He is also a Senior Clinical Research Associate at the Primary Care Unit of the University of Cambridge, interested in screening, implementation and inequalities. He is currently trialing screening for atrial fibrillation (a heart condition associated with 30% of strokes) with a hand-held ECG device. He is the Clinical Lead for Research for the Cambridgeshire & Peterborough Integrated Care Board (South) and is involved in using evidence to guide pilot programmes using digital technology.
Our Partner Organisations
To maximise the impact of our work, we have partnered with different heart organisations from across the UK. We are extremely grateful for their support.
If you’d like to learn about our partner organisations, click on one of the links below.
The British Heart Foundation Scotland (BHF Scotland) is a cardiovascular research charity in the United Kingdom. It funds medical research related to heart and circulatory diseases and their risk factors, and runs influencing work aimed at shaping public policy and raising awareness.
In 2021, a study conducted by YouGov ranked the British Heart Foundation as the top charity or organisation in the UK by per cent of adults who hold a positive opinion of the organisation.
Chest Heart and Stroke Scotland (CHSS) are Scotland’s largest health charity working to help people with chest, heart and stroke conditions live life to the full. CHSS provides the hospital at home service thanks to their committed nurses, support worked and volunteers, as well as a number of information resources regarding chest, heart and stroke conditions.
The Queen’s Nursing Institute is a registered charity dedicated to improving the nursing care of people in the home and community. They promote excellent nursing care for everyone, where and when they need it.
Cavell Nurses Trust provides grants, advice and a listening ear to nurses, midwives and healthcare assistants looking to take charge of their finances and feel more in control. So when health, relationships and bills are causing stress, Cavell is there to help.
Beat SCAD UK is a patient-led charity that aims to raise awareness of SCAD (spontaneous coronary artery dissection), support SCAD patients and their families and raise funds for research into the condition. Their mission is threefold: Awareness, Support and Research.
Blood pressure UK are the only UK charity dedicated to lowering the nation’s blood pressure to prevent disability and death from stroke and CVD. They raise awareness of high blood pressure to find the millions of people in the UK who don’t know they have it, and provide information and support to bring it under control.
British Association for Cardiovascular Prevention and Rehabilitation (BACPR) represents all professionals involved in cardiovascular disease prevention and rehabilitation. Their aim is to support health professionals in the development, delivery and assessment of evidence-based, individualised programmes of prevention and rehabilitation which have been appropriately funded and which are accessed both by individuals with established cardiovascular disease (CVD) and those with significant CVD risk factors.
Health All Round is a registered charity and voluntary sector agency which aims to support people living in Gorgie, Dalry, Saughton, Stenhouse and surrounding areas of Edinburgh to live longer, healthier lives. Using a community development approach, the charity provides services focusing on physical, social and emotional wellbeing, and aims to build social capital and reduce inequalities within the city of Edinburgh.
Cardiomyopathy UK are the only charity in the UK supporting children, young people and adults with the life-limiting heart condition cardiomyopathy. They are a community of people affected by cardiomyopathy, medical experts, and charity professionals working to provide support and information, campaigning for better access to quality treatment, saving lives through raising awareness and providing hope through shaping research.
South Asian Health Foundation (SAHF) is a registered charity founded in 1999 to promote good health in the UK’s South Asian communities. They are one of the UK’s leading British Asian health charities. Their mission is to assist persons living in the UK, particularly those of South Asian origin, who are experiencing conditions of sickness, hardship or distress in particular by supporting organizations; implementing and establishing developmental projects which serve the needs of those persons and improve their conditions of need.
The British Society for Heart Failure was founded in 1997 and registered as a charity in 1998 by a group of leading cardiac healthcare professionals who recognised a gap in knowledge and understanding of heart failure across the health service. Professor Philip Poole-Wilson, the founding chairman of the BSH was interested in heart failure, coronary heart disease and the global prevention of heart disease and stroke. Heart failure was his major research focus and his work covered both basic science (laboratory studies) and clinical research. He was an enthusiastic supporter of high-quality fundamental research and a strong advocate of translational research so that what was learnt in the laboratory could be implemented more quickly and efficiently in medical practice.
The Pumping Marvellous Foundation (PMF) is the UK’s patient-led Heart Failure charity. Founded by a heart failure patient whose experiences whilst rehabilitating, shaped the Foundation’s goals and principles of a patient-centric charity focused on improved patient outcomes.
Royal College of General Practitioners (RCGP) is the professional membership body for GPs in the UK. Their purpose is to encourage, foster and maintain the highest possible standards in general medical practice. RCGP supports GPs through all stages of their career, from medical students considering general practice, through to training, qualified years and retirement.
Heart Rhythm Alliance provide information, support, education and awareness for all those affected by or involved in the care of people living with an irregular heart rhythm.
APOLLO social science research group are a team of researchers at Queen Mary University of London, led by Professor Deborah Swinglehurst. Their home is the Centre for Primary Care in the Wolfson Institute of Population Health. They use qualitative methods to explore and address complex contemporary challenges encountered in health care. They work in primary care and community settings.
Global Heart Hub is the first global non-profit organization established to provide a voice for those living with or affected by cardiovascular disease. It is an alliance of heart patient organisations, aiming to create a unified global voice for those living with or affected by heart disease.
Their aim is to unite patient groups from around the world under the umbrella of Global Heart Hub. Their combined mission is to raise awareness of heart disease and the challenges it presents in everyday life. Global Heart Hub is a platform for heart patient organisations to share their views, learn from each other’s best practice, unite on common advocacy goals, and share resources. They aim to increase awareness and understanding of the many heart conditions that exist, improve patient outcomes, enhance quality of life, and optimise longevity and healthy aging.
Dr Paul Lapok, Edinburgh Napier University
Heidi Koikkalainen, Edinburgh Napier University