About us | Understanding patient data

Understanding Patient Data has been set up to support better conversations about uses of health information. We think that responsible use of patient data has the potential to improve everyone’s health and deliver better care. It is important that everyone can find out how patient data is used and why, and understand more about the safeguards that are in place to protect patient confidentiality.

Our aim is to develop tools and resources to help inform discussions and support responsible uses of data. You can find out about our work, governance, funding and supporters on this page, or contact us for more information. Understanding Patient Data is led by a small core team, based at the Wellcome offices in London, UK and has been set up to run for two years.

Aims and objectives

We aim to support discussions with the public, patients and healthcare professionals about uses of health and care data by:

providing objective evidence about:
- how and why data can be used for care and research
- the benefits and risks
- what is allowed and not allowed
- how personal information is safeguarded
helping people make informed decisions when they have options about how data might be used
developing advocates who can champion the responsible use of data
bringing together, and partnering with, other engagement initiatives to strengthen the voice of individual activities
working with the media to present an even-handed portrayal of stories relating to health data
providing analysis about public attitudes to help inform NHS England, Department of Health and NHS Digital policy and communications
examining emerging issues from new data-driven technologies and the implications for public confidence.

Meet the team

Nicola Perrin Head of Understanding Patient Data
Natalie Banner Policy Adviser (also part of Wellcome Policy team)
Jen Boon Policy Researcher
Danil Mikhailov Tech Lead (also Head of Digital Strategy & Innovation, Wellcome)
Philippa Shelton Policy and Communications Officer

Governance

A Steering Committee helps provide strategic direction and oversight for our work. Members of the Steering Committee are:

Lorraine Jackson Department of Health
Mark Henderson Wellcome Trust
Shar Nebhrajani on behalf of Research Councils UK
Sir Nick Partridge Deputy Chair, UK Clinical Research Collaboration
Jem Rashbass Public Health England
Professor Peter Weissberg CBE, FMedSci

We are also supported by an advisory group representing a wide range of stakeholders to provide a broader perspective to our work across different audiences.

Dr Amitava Banerjee Health Informatics Unit Lead for Clinical Informatics Education, Royal College of Physicians
Aisling Burnand MBE Chief Executive, Association of Medical Research Charities
John Carvel National Data Guardian Panel
Chris Carrigan University of Leeds
Simon Denegri NIHR National Director for Patients and the Public; Chair, INVOLVE
Professor Carol Dezateux CBE FMedSci UCL Institute of Child Health
Fiona Fox Director, Science Media Centre
Mark Golledge Programme Manager – Health and Care Informatics, Local Government Association
Professor Peter Knight Executive Director, Oxford University Hospitals NHS Foundation Trust; Senior Fellow, Nuffield School of Medicine and Population Health, Oxford University
Rachel Merrett Deputy Head of Data Policy, NHS England
Katrina Nevin-Ridley Director of Communications, Genomics England
Hilary Newiss Chair, National Voices
Viv Parry Writer and Broadcaster
Dr Mark Taylor Senior Lecturer, School of Law, University of Sheffield

Funding

The following organisations provide funding support for Understanding Patient Data:

Our views and outputs are independent of Government and the other funders.
Understanding Patient Data has the backing of the UK Clinical Research Collaboration Board.

Supporters

These organisations support the work of Understanding Patient Data, sharing information and engaging with their membership to help develop the team’s ideas and resources.

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