Understanding Patient Data aims to make the way patient data is used more visible, understandable and trustworthy, for patients, the public and health professionals.
Understanding Patient Data (UPD) is a hosted organisation of the NHS Confederation in London, UK. It is funded by Wellcome, the Medical Research Council, the National Institute for Health and Care Research and NHS England. Our remit includes all countries of the UK and international collaborations too.
We focus on data routinely collected as part of a person’s interactions with the health service, that might be used for purposes beyond individual care without explicit consent. This data is highly useful for research and planning purposes, by health and care bodies (e.g. the NHS), academics, charities and commercial organisations, but its use can be controversial.
We provide objective information about how patient data is used and bring the views of patients and the public to policymakers and data holders, to ensure data is being managed and used in ways that are worthy of public trust.
Aims and objectives
We do this in five connected ways:
Creating resources – we produce engaging, accessible information resources and guidance on how to talk about patient data, freely available on a CC-BY license.
Understanding people’s views – we commission and undertake attitudes research to understand people’s views, expectations and concerns about data use, with a particular focus on minoritized or marginalised voices.
Developing the community – we support those who work with or care about patient data through convening and partnership projects, building a network of advocates and disseminating good practice.
Influencing and advocating – we translate attitudes and engagement research into insights for policy and practice (at both local and national levels). We provide advice and consultancy to those who are making decisions about data use, encouraging them to take on board people’s questions and concerns to build more trustworthy systems for managing and using data.
Communications and media – we provide advice and commentary to journalists and others seeking to understand the key issues about data, to promote more balanced reporting.
Understanding Patient Data was set up in 2016 to support conversations with the public, patients and healthcare professionals about uses of health and care data. It was originally a two-year initiative, supported by Wellcome, the Medical Research Council, the Economic and Social Research Council, the Department of Health and Social Care, and Public Health England.
The programme was extended beyond the initial two years, continuing to be based at Wellcome. During its time at Wellcome, UPD delivered a number of resources, Data Saves Lives animations, public engagement work, advocacy on what trustworthy use of health data means in practice, and supported the health data community.
As of 17th April 2023, UPD has found a new home at the NHS Confederation.
UPD’s success lies in its focus on supporting the health community, and in the support that it receives in return. The team will be actively seeking stakeholders’ input in the development of each UPD project to ensure that we provide the community with the research, resources and representation they need to make the way patient data is used more trustworthy.
The new phase of UPD will have three thematic workstreams:
health data policy
population health management and use.
Meet the team
Nicola Hamilton Head of Understanding Patient Data
Emma Lagerstedt Policy and Engagement Manager
Emma Morgan Policy and Engagement Manager
Nicola is the Head of Understanding Patient Data, responsible for setting the direction of UPD with the support and sign-off from the UPD Steering Group. She joined UPD from the UK Health Security Agency, where she was the Head of Delivery within the Data Operations directorate, leading projects and programmes to enable better use of health data to drive public health action. Nicola has been working within the field of health data for the last three years, including holding the role of secretariat for the Goldacre Review on the use of health data for research and analysis. Prior to this, she has worked on other digital and data programmes across the Civil Service, as well as holding policy and project delivery roles, in government departments such as the Home Office, the Department for Work and Pensions, and the Department for Business, Energy and Industrial Strategy. Nicola is passionate about using data in safe and secure ways to improve health, and promoting effective community engagement
Before joining Understanding Patient Data, Emma worked in health policy and government affairs in the pharmaceutical industry, specialising in policy and patient advocacy in oncology, cardiovascular disease, infectious disease and immunology. She also worked at a health public affairs agency where she delivered policy analysis and strategic engagement programmes for health and social care clients in Westminster, focusing on medical technology with an emphasis on data and digital policy.
Emma has a background in clinical psychology and has worked for NHS Child and Adolescent Mental Health Services (CAMHS) teams and charities such as Victim Support. Over time, she moved away from the front line into the area of data analysis within health care, working in the Healthcare Information Team at Priory Group, and in the Evaluation and Impact Team at Alzheimer’s Society. Alongside work, she is undertaking an MSc in Health Data Analytics at UCL, which closely aligns with UPD’s focus on health data policy, legislation, and management.
We want to be open about what we work on, why and what the impact has been. Please see our annual reports below.
Steering group minutes
Please see our steering group minutes from the last year below. If you are interested in minutes from previous years, please contact us.
Understanding Patient Data is now a hosted organisation of the NHS Confederation. It is funded by Wellcome, the Medical Research Council, the National Institute for Health and Care Research and NHS England.
Our views and outputs are independent of Government and the other funders.
Meet the Steering Group
The UPD Steering Group provides expert advice to the UPD team and the NHS Confederation Board of Trustees, as the governing body of the hosting organisation. It is there to support the strategic direction of UPD, helping it to stay true to its purpose and meet the requirements set out in its funding agreements.
Whilst it is an independent steering group, there is representation from the NHS Confederation Board of Trustees and UPD’s funders due to their expertise and shared areas of interest. Governance of UPD is managed within the UPD team and the NHS Confederation.
Peta Foxall - Chair
Peta is committed to public service and has extensive experience of leading and working in multi-disciplinary teams within the NHS, higher education and charitable bodies. She completed a full nine-year term of office as Lead Governor of the Royal Devon University Healthcare NHS Foundation Trust (formerly the Royal Devon and Exeter NHS Foundation Trust) in 2022, balancing the key priorities of the voices of patients and communities with governance and accountability. She was also national Chair of The Wildlife Trusts, from 2017-2022. Peta is a volunteer at the Chatty Café Scheme and, as former trustee, a supporter of the #iwill Movement, advocating for youth social action across health and care, the environment and education and a Senior Independent Trustee at the NHS Confederation (Hosting Organisation for UPD) responsible for patient voice and safeguarding.
Peta has a professional background in biomedical science, and has chaired the University of Exeter's Medical School research ethics committee, meaning she has a wealth of expertise in complex health data, ethics and consent with a patient focus she can bring to the UPD Steering Group.
Dr Claire Bloomfield
Dr Claire Bloomfield is interim Director of the Centre for Improving Data Collaboration, which she joined in June 2021. As the Senior Responsible Officer for the Data for Research and Development programme, Claire oversees development and delivery of the Transformation Directorate’s coordinated investments in health data for R&D, to support the ambitions of the Life Sciences Vision, Vision for future of UK Clinical Research Delivery and Genome UK. Claire sits on the Steering Group as a representative of NHS England as a funder of UPD.
Dr Frances Burns
Dr Frances Burns is lead for the Northern Ireland Trusted Research Environment (NITRE), and implementation of regulations for secondary use of Health and Social Care Data in Northern Ireland, as initiatives under the NI HSC Data Institute. She is Co-founder and Director of the Northern Ireland Public Data Panel (NIPDP) a cross-sectoral infrastructure for public dialogue in Northern Ireland.
She has worked in participant engagement, data linkage and consent for research including the development of the Northern Ireland Cohort for the Longitudinal Study of Ageing (NICOLA), Northern Ireland’s largest public health research project.
Frances brings expertise on the Northern Irish Data Landscape to the UPD Steering Group and is passionate about empowering publics in the use and value of their data.
Chris is the Data Adviser to use MY data, the only UK independent patient movement focussed on the uses of patient data. Chris was previously appointed the Rutherford Fellow to work in the area of patients and data for Health Data Research UK (HDR UK) and subsequently the Chief Operating Officer and Patient and Public Involvement Lead for DATA-CAN, the health data research hub for cancer. He also chaired IGARD (the Independent Group Advising on the Release of Data) from 2016 to 2019.
Chris brings a wealth of experience in health data and patient advocacy with an emphasis on highlighting the patient voice to the UPD Steering Group.
Rebecca is Head of Strategy, Data for Research and Development at NHS England (one of the funders of UPD, although Rebecca sits on the board as an SME in the data landscape in England). She brings extensive experience in data, in particular understanding of the data landscape in England including up-to-date knowledge on the deployment of Secure Data Environments for Research and Development. Her team feeds into government policies, and funds infrastructure development to support research and innovation.
She brings expertise on data policy and infrastructure, and healthcare providers in England to the UPD Steering Group.
Professor David Ford
Professor David Ford is the Co-Founder and Director of the Secure Anonymised Information Linkage (SAIL) Databank, and the Secure e-Research Platform (SeRP), which used by researchers and data custodians around the world to safely curate and share data. In addition, he is Professor of Informatics at Swansea University and Director of Population Data Science based in Swansea University Medical School.
David is passionate about using public data for public good and brings in-depth expertise on the Welsh data landscape and maintaining public trust when it comes to the use of sensitive personal data to the UPD Steering Group.
Professor Roger Halliday
Professor Roger Halliday, Chief Executive of Research Data Scotland and former Chief Statistician of Scotland. He also has experience working in policy for decision making on NHS issues. His areas of expertise are around transforming services with data, and he has experience working in the fields of health, children, learning, skills and the economy.
Roger will bring expertise on the Scottish Data Landscape to the UPD Steering Group.
Layla represents the Office for the National Data Guardian (NDG) in a communications role. The National Data Guardian supports improved health and care outcomes for all through the safe, appropriate, and trustworthy use of data. It is an apolitical, independent role, granted powers in The Health and Social Care (National Data Guardian) Act 2018to issue guidance to the system about the processing of health and adult social care data in England. The NDG provides advice and challenge on data policy and programmes to ensure that data is always used lawfully and ethically – which aligns with UPD’s aim of increasing transparency and accountability around data use.
Having worked for the NDG for five years, she brings to the group a wealth of experience in data privacy and policy in addition to her communications expertise to the UPD steering group.
Emily Jesper-Mir & Rebecca Asher
Emily and Rebecca work in a jobshare as Partnerships & Engagement Managers in the Data for Science and Health team at Wellcome (a funder of UPD). They were formerly Engagement Managers for UPD when it was hosted at Wellcome. The Data for Science and Health team aims for trustworthy practice by changing how data and software in health research are funded, developed and governed. The programme is global and committed to ensuring that people in low- and middle-income countries benefit from innovation with health data, as well as those in high-income countries.
Emily and Rebecca champion an equitable approach to engagement, with the communities who will use and be affected by data and software shaping their development, application and governance.
Dr Rachel Knowles
Dr Rachel Knowles is the Medical Research Council (MRC) Lead for Clinical Research Policy, Ethics and Governance, as well as being a public health doctor and researcher in paediatric epidemiology at University College London. MRC funds research at the forefront of science to prevent illness and develop therapies and improve human health.
Rachel will bring experience in ethics, governance and promoting public involvement in clinical research and a funders perspective to the UPD Steering Group.
Mavis is a social scientist who draws from anthropology and sociology, as well as her own healthcare background, to explore the impact of health and data-driven technologies on society. She is a Senior Researcher at the Ada Lovelace Institute, where she researches impacts of data and AI across health and other contexts.
Her interests extend to how science and technology intersect with patient or public experiences of those technologies and enable her to consider the broader societal impacts. She has expertise in data governance and ethics and aims to apply these interests and knowledge to real-world policy decision-making in ways that do not exacerbate inequalities.
Valerie has enjoyed a lifelong career in the voluntary sector, including leadership roles at the National Society for the Prevention of Cruelty to Children (NSPCC) and Royal National Institute of Blind People (RNIB). She is a respected columnist, commentator and speaker both nationally and internationally, and was awarded the honour of Fellow of the Chartered Institute of Fundraising. She is a Trustee and Chair of the Renumeration board at the NHS Confederation (Hosting Organisation for UPD) and has previously held NHS Non-Executive Director roles at a Primary Care Trust, a Strategic Health Authority and an Ambulance Trust.
Currently, Valerie combines her not-for-profit governance and management consultancy with being a Chair of Independent Review Panels for NHS Continuing Health Care appeals alongside a wide range of volunteer roles. She feels passionately about issues around equality and diversity and the need to embrace diversity of thought and experience.
Valerie will bring expertise in fundraising and finance, passion for inequalities and strong communication skills to the UPD Steering Group.
David Parkin is a Senior Policy Advisor on NHS IT and Data at the British Medical Association. He brings in depth expertise of the challenges of implementing IT infrastructure and data governance changes in primary and secondary care from the perspective of Healthcare Professionals.
David brings expertise on Healthcare professionals views and priorities to the UPD Steering group.
Liz is Senior Research Policy Officer in the Science, Research and Evidence Directorate of the Department of Health and Social Care (DHSC). She was previously Senior Policy Advisor at the Office for Life Sciences.
The DHSC funds the National Institute for Health and Care Research (NIHR, a funder of UPD). Liz will bring experience in government data policy and analysis, as well as a focus on public and patient involvement, to the UPD Steering Group.
Sam is Assistant Director of Policy and Strategy at the Race and Health Observatory (RHO). The RHO work to identify and tackle ethnic inequalities for health and care by facilitating research, making health policy recommendations and enabling long-term transformational change. Sam is responsible for driving the policy function, making connections across the health and care landscape and using evidence to inform national policy. In previous roles, Sam has worked at NHS England overseeing an action research programme into how organisational culture is experienced by black and minority ethnic groups in the NHS.
Sam brings expertise in population health and tackling health inequalities to the UPD steering group.
Jeremy is Director for Public Voice at the National Institute for Health and Care Research (NIHR - a funder of UPD). He has responsibilities for patient and public involvement in health and care research and for NIHR's work on dissemination and adoption of research findings. He is a former chief executive of the charity coalition National Voices.
Jeremy brings experience in public engagement and communication of research evidence, in addition to a funder's perspective, to the UPD Steering Group.