The Steering Group was created with the goal of designing and promoting innovative, streamlined, and transparent data governance approaches that facilitate faster and more predictable access to and use of data. The group is cross-sector, including representatives from the health research and administrative research communities as well as members of the public. By bringing together cross-sectoral expertise, the group aims to facilitate collaborative learning and alignment between processes for accessing administrative data, health and care service data and research study data, utilising previous work where possible.
One aspect of building trustworthy data access governance models and a guiding principle of the Alliance is transparency. Transparency not only helps to build trustworthiness but also helps in promoting consistency across data custodians, highlighting the need for organisations to streamline the information they present about their processes. Members of the Alliance are committed to making the terms of access clear, such as expected timescales and costs, and being transparent about the type and quality of data available. In January 2022 the Alliance published the first ever recommended standards for data use registers. The standards outline five recommendations to support data custodians and controllers responsible for the safe storage, processing and sharing of data, to become more transparent about how, why and by whom health data is being used for research.
Public Advisory Board (PAB)
Building and maintaining public trust through transparent data access procedures is a priority for HDR UK’s public involvement and engagement work. HDR UK’s Public Advisory Board (PAB) produced a Report in 2021 with recommendations on public involvement in data access processes following a survey of 45 Alliance members’ webpages. This report highlighted missed opportunities to inform and involve the public about policies in relation to health data use, along with a lack of consistency in how data access requests are assessed and made transparent across the Alliance members.
As a follow-up to the 2021 report, in 2022, the PAB investigated how well data access processes and public involvement in those processes were being communicated to the public. In particular, they undertook a search of over 70 Alliance members’ websites to assess the extent to which information was available, accessible and up to date. PAB’s recommendations for members of the Alliance were presented in the January 2023 meeting and can be found here: Clear communications about data access procedures. These recommendations were also shared in the Introducing standards to inform good practice blog written by PAB member Alan Holcroft in March 2023.
Building on this work, HDR UK and the Five Safes Action Force, a sub-working group of the Pan-UK Data Governance Steering Group, conducted a more in-depth review of the accessibility and transparency of the data access application processes of all Alliance members, focusing on the following: (1) whether the custodian published their data access application form and information about each step in the data access process on their webpages; and (2) whether custodians’ websites communicated adherence to the Five Safes in their data access processes.
Summary findings from these two combined pieces of work are set out in Table 1.
Table 1. Overview of findings from review conducted by the Public Advisory Board and the Five Safes Action Force on accessibility and transparency of the data access application processes of Alliance members.
|Around 80% of Alliance members did not have an open data access application form on their website.|
|Over 80% of Alliance members did not have sufficient information available on their website about data access processes and what is required from researchers to gain access to data.|
|Around half of the Alliance members had some information on use of data for research but often it was not readily accessible from the homepage.|
|Many Alliance members did not appear to have up to date information on webpages; some webpages still made reference to expired Control of patient information (COPI) notices for example.|
|Many websites did not include a comprehensive list of datasets that were available for research.|
|Not all websites published past projects that have been approved.|
|Where linkage is possible, Alliance members’ websites are not always clear which data controllers need to provide approval.|
|Most of the websites had not considered the public’s need for information and did not have a section of the website targeted to a public audience. Much of the information provided seemed to be targeted at researchers; websites used academic language and lacked clarity on the involvement of patients and the public in data access processes.|
The standards below have been developed from the recommendations provided by the Public Advisory Board and the Five Safe Action Force. They are designed to guide best practice for transparency and have gone through a process of consultation and feedback from the PAB and the Steering Group.