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:

  1. 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
  2. helping people make informed decisions when they have options about how data might be used
  3. developing advocates who can champion the responsible use of data
  4. bringing together, and partnering with, other engagement initiatives to strengthen the voice of individual activities
  5. working with the media to present an even-handed portrayal of stories relating to health data
  6. providing analysis about public attitudes to help inform NHS England, Department of Health and NHS Digital policy and communications
  7. examining emerging issues from new data-driven technologies and the implications for public confidence.

Meet the team

  • Nicola Perrin Nicola Perrin Head of Understanding Patient Data Twitter
  • Natalie Banner Natalie Banner Policy Adviser (also part of Wellcome Policy team) Twitter
  • Jen Boon Jen Boon Policy Researcher
  • Danil Mikhailov Danil Mikhailov Tech Lead (also Head of Digital Strategy & Innovation, Wellcome)
  • Philippa Shelton 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
    Lorraine Jackson Department of Health
  • Mark Henderson
    Mark Henderson Wellcome Trust
  • Shar Nebhrajani
    Shar Nebhrajani on behalf of Research Councils UK
  • Sir Nick
    Sir Nick Partridge Deputy Chair, UK Clinical Research Collaboration
  • Jem Rashbass
    Jem Rashbass Public Health England
  • Professor Peter Weissberg
    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:

  • Wellcome
  • Medical Research Council
  • Department of Health
  • Economic and social research council
  • Public Health England

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.

  • Association of Medical Research Charities
  • Arthritis research UK
  • British Heart Foundation
  • Cancer Research UK
  • Cancer 52
  • Connected Health Cities
  • CPRD
  • Farr
  • Genomics England
  • HRA
  • Information Governance Alliance
  • involve
  • Transforming mental health through research
  • Macmillan
  • National Data Guardian
  • National Institute for Health Research
  • The Richmond Group of Charities
  • Uk Clinical Research Council
  • use MY data