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 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

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  • Nicola Perrin Head of Understanding Patient Data Twitter
  • Nicola Perrin Head of Understanding Patient Data Twitter
  • Nicola Perrin Head of Understanding Patient Data Twitter
  • Nicola Perrin Head of Understanding Patient Data Twitter
  • Nicola Perrin Head of Understanding Patient Data Twitter
  • Nicola Perrin Head of Understanding Patient Data Twitter

Governance

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

  • Lorraine Jackson Department of Health
  • Lorraine Jackson Department of Health
  • Lorraine Jackson Department of Health
  • Lorraine Jackson Department of Health
  • Lorraine Jackson Department of Health
  • Lorraine Jackson Department of Health

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.

  • Paul Baverstock Director, Paperless 2020 Communications, NHS Digital
  • Aisling Burnand Chief Executive, AMRC
  • Chris Carrigan UseMYdata and Chair, IGARD
  • Simon Denegri Chair of INVOLVE and National Director for Public Participation and Engagement in Research, NIHR
  • Professor Carol Dezateux Professor of Paediatric Epidemiology, UCL Institute of Child Health (on behalf of Academy of Medical Sciences)
  • Fiona Fox Director, Science Media Centre
  • Mark Golledge Programme Manager – Health and Care Informatics, Local Government Association
  • John Cavell Director, National Data Guardian Panel
  • Cynthia Joyce Director, MQ
  • Peter Knight Chief Information and Digital Officer, Oxford University Hospitals
  • Prof Nigel Mathers Honorary Secretary, Royal College of GPs
  • Rachel Merrett Deputy Head of Data Policy, NHS England
  • Andrew Morris Farr Institute
  • Viv Parry Genomics England
  • Martin Severs Medical Director and Caldicott Guardian, NHS Digital
  • Jeremy Taylor Chief Executive, National Voices
  • Mark Taylor Chair, Confidentiality Advisory Group
  • Lynda Thomas Chief Executive, Macmillan [or another Richmond Group member]
  • Karin Woodley Chief Executive, Cambridge House (on behalf of ESRC)
  • Shahid Hanif, ABPI, or Jane Juniper Pharmonyze
  • MRC and ESRC representatives (TBC)

Funding

The following organisations provide funding support for Understanding Patient Data:

Medical Research Council, Economic and Social Research Council, Department of Health/National Institute of Health Research, Public Health England and Wellcome Trust.

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.