Skip to main content

Independent Advisory Panel on Data Release (IAPDR) Terms of Reference

Purpose

Support, challenge, and advise NHS Digital to ensure appropriate, timely access to NDRS data through transitional arrangements.


Objectives of the IAPDR

IAPDR is an advisory body that will support and challenge NHS Digital on transitional arrangements for access to data from the National Disease Registration Services through the Office for Data Release process. This includes:

  1. The effectiveness of mechanisms to support and promote appropriate, timely data sharing from NDRS for secondary purposes.
  2. Delivering transparent and effective public and/or professional facing communication related to the transition of ODR services into NHSD.
  3. Interactions, alignments and responsibilities of UKHSA Office for Data Release with NHSD data release services.
  4. The extent to which NHSD planned ways of working with regards to data sharing are customer-centric and focused on improving operational delivery for service users.
  5. Any other issues that IAPDR believe are necessary to be considered, in support of legitimate and lawful access to NDRS data for secondary purposes.

Standing members

Professor David Forman Chair

  • 3 patient and public voice representatives
  • representative of UK Faculty for Public Health
  • representative of the National Cancer Research Institute
  • representative from the Association of British Pharmaceutical Industries
  • representative of the Royal College of General Practitioners
  • representative of the Office of the National Data Guardian
  • 2 representatives of the academic community, nominated by Health Data Research UK (HDR UK) and the National Institute of Health Research
  • Director / Associate Director of Research and Clinical Trials, NHS Digital (observer)
  • other relevant NHS Digital colleagues (observer)
  • Secretariat (provided by NHS Digital)

Learn more about the IAPDR members


Logistics

Frequency: Bi-monthly

Venue: Microsoft Teams call

Inputs: Papers provided in advance for pre-reading, otherwise shared during meeting

Outputs: Recommendations for the data services team, notes of the meeting by secretariat


Standing agenda items

1. Welcome, apologies

2. NDRS and ODR transition

3. Any Other Business (AOB)


Reporting

The panel will report to NHS Digital via the Director of Research and Clinical Trials, who is accountable for NHS Digital’s data access services.


Further information

Last edited: 21 April 2022 1:09 pm