Guidance

[Withdrawn] Independent Advisory Panel on Data Release

Updated 31 August 2021

This guidance was withdrawn on

On 1 October, Public Health England (PHE) was disestablished and its functions shared across a number of ‘receivers’ organisations. During this period of transition, the Office for Data Release (ODR) paused its usual approval process to focus on the handover of data resources and applications to the receivers.

UKHSA continues to work with all receivers to support access to data previously available through PHE.

Read the update on arrangements for how data will be made available from NHS Digital.

Read how to apply for access to protected data from UKHSA.

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This publication is available at https://www.gov.uk/government/publications/accessing-public-health-england-data/independent-advisory-panel-on-data-release

Introduction

Public Health England (PHE) collects, collates and uses data on individuals, their health and wellbeing, and their interactions with the NHS, as well as data on the wider social, economic and environmental determinants that affect health outcomes. These data are used to enhance health care experiences for individuals, expand knowledge about disease and appropriate treatments and to strengthen understanding about the effectiveness and efficiency of our healthcare system.

As part of our programmes of work, PHE routinely publishes tools, such as Fingertips, designed to support Joint Strategic Needs Assessments and commissioning, to improve health and wellbeing, and reduce inequalities.

To complement these data tools and open data resources, requests to access de-personalised or personally identifiable data are made through an application process, facilitated by the Office for Data Release (ODR). Oversight of the policies and procedures within which the ODR operates in order to facilitate data access is provided by the Data Release Assurance Board.

To fully realise the value of these data collections and make sure that we continue to uphold the highest standards expected of us as a data custodian, PHE has established an independent panel, the Independent Advisory Panel on Data Release (IAPDR). IAPDR will work with PHE to provide advice on the opportunities and challenges of data sharing. In particular, it will make recommendations on how PHE can promote access to data, conditions for use and how systems can be improved to best meet the needs of those who require such access for clinical audit, service evaluation and research.

The IAPDR is a multi-disciplinary group that draws together the expertise of individuals representing public and patient voices, as well as professional bodies and the research community. Its terms of reference are provided below.

Terms of reference

See the IAPDR terms of reference.

Membership

The IAPDR membership is multi-disciplinary and consists of a Chair, Deputy Chair and up to eight additional members. The current membership (2019 to 2020) is composed of the representatives of the following public and professional groups:

  • Chair

  • three patient and public voice representatives (one as Deputy Chair)

  • a representative of UK Faculty for Public Health

  • a representative of the Royal College of General Practitioners

  • a representative of the National Cancer Research Institute

  • a representative from the Association of British Pharmaceutical Industries

  • two representatives of the academic community, nominated by Health Data Research UK and the National Institute for Health Research

  • representative of the Office of the National Data Guardian

The IAPDR is chaired by Professor David Forman.

To learn more about the members of the IAPDR, you can download a copy of the membership list and their associated biographies.

Minutes

You can download the latest approved minutes from the IAPDR meetings.

Meetings of IAPDR

The next meeting of the IAPDR is provisionally scheduled on:

  • 26 April 2021

Contacting the IAPDR

Should you wish to contact the IAPDR about existing PHE policies and procedures for data access, communication about how data is shared or any other issue in the remit of IAPDR, you may contact the Chair of the IAPDR by email at: IAPDR@phe.gov.uk

Questions about current applications for data or to commence a new application for ODR consideration should be directed to the ODR. For further details about the ODR and to download a copy of the ODR pre-application pack, visit the ODR website.

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