HDR UK today announce the addition of seven new members to the HDR UK Public Advisory Board. The Public Advisory Board, originally formed in 2019, sits within the HDR UK governance structure, and provides strategic advice to the organisation on its direction of work, including its Public and Patient Involvement and Engagement (PPIE) strategy. The Board also works with HDR UK to encourage and enable effective health data science by involving patients and the public, advising on ways to demonstrate trustworthiness and build public confidence in their work, and grow public understanding of the safe and secure access to and use of health data for research.
HDR UK is committed to earning trust and confidence in the safe and secure access to and use of health data for research and innovation, and the Public Advisory Board play a vital part in guiding the organisation towards this goal. The new members, selected through an open and transparent recruitment process, will bring a diverse range of experiences and perspectives on the access to and use of health data for research and innovation and will join three existing members of the Public Advisory Board. They will support the Public Advisory Board to continue work on embedding patient and public involvement in data access processes and help to shape activity around transparency and public trust in Trusted Research Environments (TREs).
Amanda White, Executive Director of Engagement and Insights, Health Data Research UK (HDR UK), said:
“The Public Advisory Board has and continues to provide a significant contribution to HDR UK, ensuring that the work we do across the institute is developed in partnership with the public and in providing advice and challenge on building trust and transparency in data research. We’re delighted to welcome these seven new members to the Public Advisory Board, with each bringing extensive personal and professional skills and experience that will be hugely valuable to our projects across HDR UK.”
New HDR UK Public Advisory Board members
Aisha, a member of the public, has worked within patient and public involvement since 2016, and is currently a medical study at the University of Leicester. She is keen to increase the number of voices and participation of people from all background through the health research process.
“Everyone on the Public Advisory Board brings with them a wealth of experience that enables us to have insightful discussions and contributions to HDR UK’s activities. I am delighted to be part of the PAB and look forward to seeing the impact that our work will have.”
Aisling Burnand MBE
Aisling is a cancer patient and lifelong supporter of health research. Following her cancer diagnosis in 2021, she stepped down from her role as Chief Executive of the Association of Medical Research Charities. Aisling is a passionate supporter of the responsible use of data for research and care.
“I am delighted to have been appointed to HDRUK’s Public Advisory Board. I believe passionately in involving the public and patients in research so that research is more patient centred and achieves better outcomes.”
Alan is a member of the public and is particularly interested in developing the trust and confidence of the public in providing access to and consent for their data to be used for research. He began his career in the public sector, advising on the design and analysis of public consultation projects.
“I am aware of some of the concerns that people may have, but also the positive impact that providing access to data could have in research which ultimately may improve the lives of all. I am excited to be involved as a member of the Public Advisory Board to play a part in ensuring the work of HDR UK is trusted by the public and patients.”
Gavin is a member of the public who recently retired from a career in science administration. He is hoping to bring his views into some of the big issues in sharing health data for better health and to develop strategies that engage and involve the public in a meaningful way. Gavin gained his PhD in biochemistry in 1985.
“I am serious about PPIE and hope to support the Public Advisory Board to continue advocating for patient and public involvement and engagement so that it becomes fully embedded in the world-leading work of HDR UK.”
Judith is a fulltime carer for her mum after she had a stroke in March 2017. Before leaving work to care for her mother, she worked in higher education. Judith has been involved with the Stroke Association, the Alzheimer’s Society and Cancer Research UK and is aware that health research is vital to save and improve lives.
“The Public Advisory Board allows me as an unpaid carer to share my perspective, to help in some small way to shape vital future research that will hopefully save lives and improve quality of life for many people.”
Mandy has been helping her son manage his cystic fibrosis for the past 21 years. A former mental health nurse and adult educator, she first became involved in patient and public involvement work as a lay member on the clinical reference group for cystic fibrosis and has become an active campaigner for the co-production of health and social care services. Her more recent passion relates to public involvement in research and the use of health data.
“I am committed to ensuring that the perspectives of the public, patients and carers are equally considered, and as part of the Public Advisory Board I am hoping to collaborate in the expansion of the conversation around use of health and social care data.”
Munisa is a patient, having suffered from congenital cataracts. She is also a doctoral researcher currently studying towards her PhD in Epidemiology at Brunel University London and has worked in the NHS for several years in a patient-facing role, where she gained an interest in different perspectives the public have towards the use of healthcare data.
“I have a keen interest in the importance of diversifying health data and upholding public trust through the transparency of its use. I hope to help the Public Advisory Board in these aligned goals by offering a unique perspective on how data usage can be utilised in research whilst building the public’s trust.”
A huge thank you to our outgoing HDR UK Public Advisory Board members
This week, we will also say a fond farewell to five members of the Public Advisory Board, as they come to the end of their terms. Claire Cooper, Colin Wilkinson, Kush Kanodia, Margaret Rogers and Rachel Plachcinski have been part of the HDR UK Public Advisory Board for three years and have been instrumental in supporting HDR UK’s work.
Their involvement in influencing and developing clear criteria for public involvement in the initial set up of the Health Data Research Hubs and providing feedback and guidance on their activities as they have progressed, has been crucial to ensure that PPIE is meaningfully embedded across the Hubs. The Board’s work in developing clear guidance for public involvement in data access across the UK Health Data Research Alliance and wider health organisations has also been vital in ensuring that patients and the public are involved at all stages in the health data research cycle. Finally, their support and guidance through the COVID-19 pandemic in helping the shape COVID-19 specific research and communications, has helped to ensure that HDR UK’s work is driven by the needs of patients and the public throughout.
HDR UK want to take this opportunity to say a huge thank you to them all, and hope to continue working with them in other areas of the organisation.
If you’d like to find out more about Patient and Public Involvement and Engagement at HDR UK, please email Involvement@hdruk.ac.uk.
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