Funding Opportunity to improve transparency in health data access processes for research.

Read first announcement about Transparency Standards

Background and Objectives

Transparency around how data is accessed and used helps to build trustworthiness.  Building and maintaining public trust through transparent data access procedures is a priority for Health Data Research UK (HDR UK) and a founding principle of the UK Health Data Research Alliance (the Alliance). By signing the Alliance Letter of Intent, Alliance members commit to demonstrating the principle of transparency, making the terms of data access clear and publishing a register of active projects under their custodianship.

The Alliance Transparency Standards, which were co-developed by the Pan-UK Data Governance Steering Group and HDR UK’s Public Advisory Board (PAB), aim to improve transparency of processes for accessing health data for research. They are designed to guide best practice for transparency about how data is accessed and the information available to researchers and members of the public. This includes recommendations around transparency of application processes and criteria, website navigation, appropriate use of language based on target audience and improving how organisations communicate the impact of health data research to improve and save lives.

Read more about the Pan-UK Data Governance Steering Group and the Action Forces

At the UK Health Data Research Alliance Council meeting on 14 July 2023, it was recognised that data custodians have resource constraints which may lead to challenges when seeking to implement the Transparency Standards. HDR UK is therefore offering grants of up to £15,000 to support data custodians with adoption.

To apply please complete this form.

Please return completed form to procurement@hdruk.ac.uk by 5pm BST, 2^nd October 2023.

Please also direct any questions or queries to procurement@hdruk.ac.uk

Purpose of funding awards

To support implementing of the transparency standards for health data access processes in research

Some examples of types of Projects Health Data Research UK may fund via this funding Call include:

• Website updates to set out the steps in your data access process in an accessible format with appropriate structure and language (e.g., through diagrams, videos, animations, swim lane diagram or process flows for both researchers and the public).
• Creating separate webpages/website sections directed at different target audiences e.g., separate sections for researchers and members of the public.
• Creating new website content to provide transparency about the public benefit that has been derived using data for research e.g., with video case studies.
• Lay public website review and update.
• Updating published data access application forms to meet the standards in the Fives Safes Framework.
• Publishing a Data Use Register.

Eligibility, selection criteria and application process

• Applicants must be:
  • A data custodian which grants access to their data set(s) for health data research
    OR
  • An Alliance member or willing to work towards being an Alliance member.
• Awardees must commit to:
  • Spend funds awarded by 31 March 2024.
  • Present a brief report on outputs and spend, to be shared with HDR UK and Alliance members by 31 December 2023.
  • Reporting any underspend to HDRUK as soon as possible
• For this award HDR UK will fund 100% of direct costs to the grant, and not on a proportion of full economic costing (FEC) basis. Organisational overheads and any activities not directly contributing to the research are not eligible for funding.
• Eligible costs
  • Salary costs for staff working directly on the project (e.g., analysts, project management staff)
  • Other direct costs to the project (these should be detailed in the budget template)
• Ineligible costs
  • Travel and subsistence
  • Indirect and estate costs
  • PhD studentship costs

Selection criteria and process

Selection criteria will include:

• The number of recommendations in the Transparency Standards that will be implemented by the proposed project.
• Evidence of feasibility of completion by 31 March 2024.

Process and Timing

Terms and conditions of funding

Awards will be subject to the UKRI Standard Terms and Conditions for Grants and the MRC additional Terms and Conditions for Grants.

Awards will also be subject to the following HDR UK Requirements:

HDR UK Alliance Principles for Participation, where applicable

The HDR UK Attribution Policy and any additional requirements set out in the award letter

Reporting Requirements: As there is a fixed deadline for funds to be spent, delivery of funded proposals will be monitored through a brief report on outputs and spend to be shared by 31 December 2023.