National PPI Group
Meet our members
NIHR Committee panel feedback on PPI from CSG2 successful programme development grant application
"The arrangements for patient and public involvement and engagement were outstanding"
Sarah Murray is passionate about patient care and putting the patients' needs at the centre of all innovation and research. This is what motivated her to join this novel and ground-breaking initiative and she is proud to be the Chair of the British Heart Foundation/James Lind Alliance Public and Patient Initiative for the Priority Setting Partnership. She is also Chair of the NICOR Patient Representative Group, and the Lay representative on the Executive of the Society for Cardiothoracic Surgery. She is a qualified solicitor with a broad range of NED experience both at national and regional level.
Judith Bower has been a carer and lay member of a number of Clinical Study Groups over a few years. She supports family members who have experienced many cardiac interventions. As a lay member she has a great interest in research. She has an academic background in engineering, biomechanics and education and has been a dementia adviser and trainer in dementia care for 15 years. She currently works for Empowered Carers, supporting carers of people living with dementia. Empowered Carers – Empowered Conversations (empowered-conversations.co.uk). Her passion is to make scientific language more accessible to lay members and give carers a voice in their supporting roles.
Jenny Camaradou is an alumni of EURORDIS, the voice of Rare Disease patients in Europe and one of 60 trainees from 30 countries chosen in a competitive pharma and IMI sponsored training course on medicines RD and pharmaceutical lifecycle development called EUPATI, training to become a patient expert active participant in both regulatory affairs and clinical trials. She has taken part in various PPI activities for HDRUK, BHF and is a lay member across both NIHR and NICE committees. Jenny was diagnosed with a genetic condition aged 34 and has had substantial experience as a health service user across different specialisms and surgeries, hailing from a medical family but with no clinical or scientific background herself, Jenny now has an emerging academic interest in digital engagement and patient centricity in translational research areas and is currently seeking different opportunities to foster co-creation between patients, industry, clinicians, academia working in healthcare provision.
Phil Collis lives with CVD and is experienced working with patient groups and organisations including British Heart Foundation, European Heart Network, and the National Institute for Health Research. Phil works to ensure people affected by CVD have access to evidence-based information and the opportunity to influence CVD research. Phil also acts as a patient advisor with the Centre for Patient Reported Outcomes Research Centre based at Birmingham University.
Jeremy Dearling has been involved in PPI for many years and welcomes the opportunity to support and contribute to this initiative. He will bring to research conversations the insights of being disabled through critical illness, being a carer, and those of having worked on the front line in the NHS.
Paul Haywood wishes to assist the National PPI group in identifying the clinical trials that are needed to advance cardiac surgery in the future and to help where needed in delivering the vision and outcome of the clinical trials.
Alan Keys has been a cardiac patient representative since 2004, including BHF, CQC hospital inspector, CCG Governing Body and NHSE committees. He is currently President, Cardiovascular Care Partnership (UK), British Cardiovascular Society Council, Clinical Standards and Finance Committees, BCIS and ESC Clinical Standards Committees, MINAP Domain Expert Group and NICOR Patient Reference Group. Having benefitted from surgical expertise and worked on performance quality he wishes to contribute a little to advances in cardiac surgery by supporting specialist research.
Irene Leeman is a retired dentist, mainly working with children and adults with special needs, and she taught Dental Public Health to undergrads and postgraduates. She spent 9 years as a public governor for a mental health and community services NHS Trust and is a member of the Lay Committee at the RCoA. She is passionate about patient centred healthcare and hopes to share information and contribute to improvements in cardiac care from the patient perspective. She has a personal interest in cardiac treatment and care.
Mark Lewis works for NHS Digital, the national information and technology partner to the health and care system. He has lived with Aortic Dissections since 2012 and has been an active member of the patient support group Aortic Dissection Awareness (UK and Ireland) following emergency surgery for a type A dissection in July 2018. In the last two years he has had a number of major and minor operations and is a strong believer in the ‘voice of the patient’ in medical interventions and contributing to National health care Standards/Policy. He has previously contributed to research aimed at designing a targeted UK wide screening programme that will hopefully prevent Aortic Dissections before they happen, and is keen to contribute to wider research across the broad spectrum of cardiovascular disease. He has recently joined CCP(UK). In terms of CSGs his particular interests are around Prehabilitation and Data Science.
Anthony Locke is a member of many patient advisory committees and a volunteer on a number of research projects. He is a public member on the Cardiac Surgery Research Programme Steering Committee at University of Leicester and Cardiovascular BRC as well as being a member of the BHF CRC National PPI Group.
Jara Weinkauf was born with a severe and complex congenital heart defect called Tricuspid Atresia. After multiple open heart surgeries she knows first hand, how difficult it can be to navigate all things surgery, cardiac rehab, regular doctor visits, keeping a positive spirit, and most of all staying independent and active. Therefore she is eager to contribute her knowledge and experience gained growing up with a heart condition and hopes to make life easier for fellow cardiac patients.
Gil Wheeler since his diagnosis of Hypertrophic Cardiomyopathy heart condition back in 1990, Gil has been involved with patient engagement and participation roles both at local and national levels learning to both listen and speak up for the patient. Throughout his time with this involvement he has learnt and helped to educate not only other patients but clinical staff as well. He sits on several health service steering groups looking at best practices, data, research, clinical studies and funding for new ideas to supporting the Heart patient now and in the future. He has set up 3 Facebook groups Big heart Club, Patients Voice and Empowering Patients within the NHS.
Keith Wilson is a former heart patient who had the benefit of research. Keith is now working at Liverpool Heart and Chest Hospital helping patients through their experiences benefit from research.
Wil Woan has worked in the voluntary sector for 20 years, with the last 5 years spent as CEO of Heart Valve Voice, the UK’s dedicated Heart Valve Disease Patient Organisation. During this time, Wil has launched several Parliamentary Reports into valve disease treatment in the UK, and has recently set up a Heart Valve Disease All Party Parliamentary Group. Throughout his work at Heart Valve Voice, Wil has championed innovation as means of improving the detection and treatment of heart valve disease, and was chosen to be the UK TAVI Trial patient representative.
Wil has worked with leading clinicians and policy makers to produce guidelines and standards of care which provide a framework for the future care of valve disease patients. His work on Heart Valve Voice’s 2018 Gold Standard of Care mapped an optimal treatment pathway, and is now widely seen as the benchmark for all valve disease care in the UK.
Phil Blakelock first came to the world of PPI after engaging with the BHF following surgery to replace a bicuspid aortic valve some four years ago, being invited prior to the operation to contribute to a research programme on heart muscle make-up. This brought a realisation of the link between physics / science and technology with cardiology, and how this can be brought to bear upon challenging cardiac conditions and the welfare of the population.
Phil has spent most of his career in Defence Engineering and is passionate about all things science. Having participated in a very professionally run heart research programme, Phil wants to influence new programmes and trials so that they are executed in the same way, particularly from the patient’s perspective, on how trials are communicated, and executed.
As a patient representative Phil contributes to many other PPI initiatives, pre-funding application assessments, BMJ patient reviews etc., including the All Party Parliamentary Group on “AI in heart and circulatory diseases”, as well as the House of Lords Committee on “Beyond Digital – Planning for a hybrid world”.