The Alliance has created alignment around data custodian standards, each with buy-in from the member organisations. These standards are fundamental to enabling a collaborative and coordinated approach to health data across the UK, and include: 

 

Trust and Transparency

Output Type   Publication Name  Date Published  
Transparency in data access and use  Pan-UK Data Governance Steering Group Data Access Transparency Standards  Aug-2023
Improving transparency in the use of health data for research: Recommendations for a data use register standard – White paper Jan-2022
Improving transparency in the use of health data for research: Draft recommendations for a data use registers standard – Green paper Jul-2021
Data Use Registers analysis preprint May-2021
TRE Legal Toolkit  Towards a standardised cross-sectoral data access agreement template for research: a core set of principles for data access within trusted research environments Oct-2023
TRE Data Access Agreement Template Oct-2023
PEDRI-Alliance Partnership  PEDRI-Alliance Working Group Report – inaugural meeting Dec-2023
Pan-UK Data Governance Steering Group Meeting Pan-UK Data Governance Steering Group meeting minutes – June 2024 Jun-2024
Pan-UK Data Governance Steering Group meeting minutes – Oct 2023 Oct-2023
Pan-UK Data Governance Steering Group: Value Sharing Framework for NHS Data Partnerships meeting minutes – Sep 2023 Sep-2023
Pan-UK Data Governance Steering Group meeting minutes – Jun 2023 Jun-2023
Pan-UK Data Governance Steering Group meeting minutes – Feb 2023 Feb-2023
Pan-UK Data Governance Steering Group: Innovative Data Governance Frontiers meeting minutes – Nov 2022 Nov-2022
Pan-UK Data Governance Steering Group Second meeting minutes – Jul 2022 Jul-2022
Pan-UK Data Governance Steering Group Inaugural meeting minutes – Apr 2022 Apr-2022
Using Linked Data for Research Using Linked Data for Research – Workshop #3 Apr 2023 Apr-2023
Using Linked Data for Research – Workshop #2 Oct 2022 Oct-2022
Using Linked Data for Research – Workshop #1 Jul 2022 Jul-2022

Data Standards

Output Type   Publication Name  Date Published  
Data Officers’ Group Meeting Reports Data Officers’ Group Meeting Report – May 2024 May-2024
Data Officers’ Group Meeting Report – Jan 2024 Jan-2024
Data Officers’ Group Meeting Report – Sep 2023 Sep-2023
Data Usability Recommendations for Data Standards in Health Data Research White Paper Nov-2021
Data Standards Green Paper Jun-2021
Principles for Data Standards Jun-2020
Data Utility  Data Utility Framework Green Paper Mar-2021
Data Utility Framework One Pager Nov-2020
Metadata Specification Metadata Specification for Innovation Gateway Feb-2022
Metadata Specification to Support Gateway Minimum Viable Product Nov-2019
Data Enabled Clinical Trials Meeting 3 outputs (11 September 2024) Sep-2024
Meeting 2 outputs (11th April 2024) Apr-2024
Meeting 1 outputs (5th December 2023) Dec-2023
Diversity in Data White Paper: Enhancing Diversity and Quality in Health Data Oct-2024
Workshop Report #4 – 24 May 2023 May-2023
Draft recommendations to improve the recording of ethnicity data Apr-2023
Workshop Report #3 – 18 Jan 2023 Jan-2023
Workshop Report #2 – 06 Apr 2022 Apr-2022
Workshop Report #1 – 13 Jan 2022 Jan-2022
OMOP Common Data Model techUK and HDR UK OMOP Roundtable Meeting Report Nov-2023
Second OMOP SIG Meeting Report Nov-2023
Second OMOP SIG meeting recording Nov-2023
Preliminary OMOP Mapping and Survey Results Sep-2023
Poster on OMOP survey Sep-2023
Inaugural OMOP SIG Meeting Report Jun-2023
Inaugural OMOP SIG meeting recording Jun-2023

Developing Technology Services

Output Type  Publication Type  Date Published  
Trusted Research Environments Principles and Best Practice for Trusted Research Environments Dec-2021
Trusted Research Environments (TRE) Green Paper Jul-2020

Alliance Executive Committee Meetings

View meeting minutes from all past meetings here

Alliance Council Meetings

View meeting minutes from all past meetings here

Alliance Community Bulletin

View all past issues here