Public and Patient Involvement
The BHF Data Science Centre Public Advisory Group advises and supports public involvement in the work of the Centre. The Public Advisory Group is made up of members of the public who have lived experience of heart and circulatory diseases or diabetes, and have an interest and experience in being involved in our areas of work.
What do we do?
The Public Advisory Group provides guidance and support to the BHF Data Science Centre to ensure public and patient involvement and engagement (PPIE) is embedded in all our work, where appropriate. As a group we meet quarterly to share ideas, discuss challenges and provide guidance and support to the Centre.
So far we have:
- Co-developed a BHF DSC PPIE Strategy
- Provided advice and support at BHF DSC Governance meetings
- Provided bespoke advice to all our thematic areas to ensure PPIE is embedded
- Co-presented at a Personal Monitoring Webinar
- Co-presented at the NIHR PPIE in Data Intense Research Webinar
- Contributed to the development of a Public Survey to gather priorities for cardiovascular research
- Advised and contributed to various projects to ensure PPIE is integral to the CVD-COVID-UK/COVID-IMPACT work
- Contributed to the development of communications and outputs including an opinion piece in the British Medical Journal, and our end of year round up.
Public Advisor Group Members
I have a BSc in Chemical and Polymer Technology. My career started within R&D but subsequently moved into marketing. Moved to Switzerland for 15 years becoming a Technical Director before returning to the UK as R&D Director managing four groups across the USA, the UK and Switzerland for an international packaging company.
Following a heart attack in 2007, I had a stent fitted, then developed atrial fibrillation and I was given a pacemaker and defibrillator. Retiring in 2011, I served on a BHF patient data advisory panel, Clinical Studies Committee and now sit on the BHF/CRC Oversight Board and BHF DSC Oversight Committee. My hobbies are skiing, cycling, DIY, maintaining and driving a classic MGB!
My work background is insurance management. My PPI experience, mainly cardiovascular, is over 18 years. It includes Myocardial Infarction National Audit Project Domain Expert Group, Care Quality Commission hospital inspector, CCG Governing Body, Council of British Cardiovascular Society (Fellowship), Healthwatch, various BHF work groups. Some of these continue but I am also currently involved in various cardiac research groups and one on neuro care.
I have many years’ Board level experience. I started my career in political research and have since worked in marketing, customer research and international education. I have been an advisor on many NICE Guideline Development Groups and a patient representative for the British Heart Foundation Council. My NHS experience includes roles in acute trusts, community trusts and commissioning organisations. Prior to this year, I was Deputy Chair and Lay Member for Primary Care Commissioning at BaNES, Swindon and Wiltshire CCG. A member of the Disabled NHS Director’s Network, I am currently Non-Executive Director for the BSW Integrated Care Board, chairing the People and Remuneration Committees.
I am currently a public contributor member on the BHF Data Science Centre CVD-COVID UK/COVID-IMPACT Approvals and Oversight Board.
I retired from the pharmaceutical industry after thirty years of service. I worked in sales and marketing and also have experience in training. After retirement I joined the Medway School of Pharmacy as a member of the lay advisory group in Studies, Pharmacist Education and Public Engagement.
I am currently also a Lay review and Pre-submission Member at the Research Design Services which is part of the National Institute for Health Research (NIHR). I contribute to several other projects relating to Public Involvement including the development of an Online PPIE training course.
I joined the BHF Data science Centre two years ago and contribute to the personal monitoring and enhancing cohorts thematic areas.
I am passionate about involving patients in research, not just as participants but in governance and decision-making processes to shape health research from the outset through co-production. I have extensive experience working with multiple organisations and research teams across the UK, as a person with lived experience of health conditions, a patient contributor in research and as a patient researcher myself.
I am a Voluntary Partnerships Manager for NHS England and a specialist in the involvement of volunteers in the work of the NHS and in children’s charities having previously worked for the NSPCC and Barnardo’s. I am passionate about the power of volunteering and the difference it can make to patient care, community cohesion and to the volunteers themselves.
I am a Trustee for Marlow Refugee Action and a volunteer for refugee support charity Care4Calais; spending my spare time raising funds and providing practical support to people seeking sanctuary both in the UK and overseas. I am also passionate about sustainability and spend my spare time learning how to grow and preserve my own fruits and vegetables as well as participating in various green initiatives.
I am deeply passionate about healthcare and surrounded by family members and close friends who work in healthcare. I am a Public Governor for NHS Teaching Hospitals Foundation Trust. I am also involved in a number of projects with the BHF. I have three strong beliefs: our purpose is to benefit the patients and the public, ‘look after the people who look after the patients/public’ and to ensure simple conversational English in our communication.
Until recently, I ran my own International Consultancy business in Strategy, Operations and Leadership. Prior to that I held Vice-President and Director Roles with large Global companies. I have worked in the America, Europe, Asia and Middle East and Africa.
I am also a leadership and entrepreneurship mentor with a number or organisations and charities both in the UK and internationally. In this role he has mentored and supported many leaders, entrepreneurs across the UK, Middle East and Africa. I am also Business Angel with Business Growth UK, Non-Executive Director/Trustee of a Pension Fund.
I have been a Patient’s Championing and a Carers’ Ambassador for over 10 years. I am a fervent advocate of Ethnicity, Diversity and Inclusion of the underrepresented and often marginalised groups of our society – I am passionate about participating and collaborating in committees and boards to help tackle and remove barriers to a diverse engagement in research. I enjoy working with researchers as a lay member or as a co-applicant to ensure their research initiatives promise to deliver what matters to people, help reduce health inequalities, and that patients’ and carers’ perspective reverberates throughout the research process.
I was diagnosed with Type 1 diabetes in 1966. My business career was spent in business unit management with responsibility for teams delivering technology projects to banks and airlines. Since then, I have had a number of expert by experience roles in diabetes. I am a member of the DAFNE Structured Education Executive Board, the National Diabetes Audit Partnership Board and also its Research Advisory Board, the DVLA Medical Advisory Panel on Diabetes, the DUK Diabetes Research Steering Group on Acute Care and I chair the Diabetes UK Council of People with Diabetes. Finally, I have just been appointed to the Diabetes Data Science Catalyst – Advisory Group.
I am an advocate for the use of structured education for the self-management of diabetes as a means of improving long-term outcomes and quality of life along with access to technology to assist in the treatment of Type 1 diabetes for all patients.
My experiences include various healthcare professional, public health and health services researcher roles. Whilst I acknowledge that the re-use of health and administrative data is vital to improving the health and wellbeing of the population, I believe that this must be conducted in trustworthy ways and always with active involvement of the public.
As an member of the HDR UK Public Advisory Board, I have provided a public perspective and strategic advice, and served in this capacity until January 2022. Over the past four years, I have worked alongside the Institute’s colleagues across the organisation, helping to demonstrate trustworthiness in its endeavours and to provide accessible transparency. I am also a member of the Assessment Panel for the selection of the Digital Innovation Hubs and have contributed to their subsequent milestone assessments. I have provided input into the milestone assessments of the two additional research hubs. I have also been involved in the National Core Study Data and Connectivity programme and was a public member of its Delivery Group from its inception and stepped down after helping to recruit additional public members. I will continue to be a member of the programme’s wider public advisory group and the recently formed Independent Advisory Group.
I have joined the BHF Data Science Centre as a public contributor to the Approvals and Oversight Board for CVD-COVID-UK/COVID-IMPACT, where I will help to ensure that the requests to use our data demonstrate trustworthiness and their subsequent research outputs will be of benefit to the public.
John D Walsh, OBE
I am a chartered engineer, now retired, who survived a heart attack in 1995. The event and the subsequent treatment gave me an interest in cardiology and I joined the local Community Health Council to learn more. In 1999 I got the CHC to publish the results of my survey of the local provisions for heart patients. One of my recommendations was that the local hospital should create an additional consultant post in cardiology, and within a matter of months, it had happened, the CEO of the Trust acknowledging that it was my report that did it: PPI worked, and I was hooked!
In 2003 the BHF set up its first Patients Advisory Group, and its members elected me to the chair. I was touched, and flattered, so felt I had to accept, and as a result suddenly found myself as a sort of Mr Heart-attack UK, in demand all over. Since then I’ve represented patients in the Department of Health, NICE, NIHR, MRC, RCS, the BMJ in UK, and the European Medicines Agency, EU-IMI, EUPATI and the Pharma industry more widely.
My major interest is in research, and I maintain a participation in several trials, either as team member or independent adviser. I believe that the most promising sources of future patient benefit lie in med-tech for individual patients coupled with AI techniques in big data-sets. This explains my enthusiastic backing of the BHF Data Science Centre.
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