20 May 2024
In the lead-up to the Alliance Transparency Showcase, we are sharing an exclusive look at the work carried out by three of the organisations who will be showcasing at the event.
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In October 2023, HDR UK launched a Call for Funding to support Alliance members and other custodians of health and health-relevant data in adopting the Transparency Standards, which were co-developed by HDR UK’s Public Advisory Board (PAB). The Transparency Standards are designed to support data custodians in improving the clarity and accessibility of information about data access processes for the public and researchers.
19 organisations were awarded funding and worked diligently to complete their projects by 31 March 2024.
On 22 May 2024 we will be hosting a special in-person event in London to celebrate the project outputs. The Transparency Showcase will be a fantastic opportunity to meet the project leads in person and to gain further insight into the impacts of the 19 funded projects and lessons learnt on adoption of the Transparency Standards.
Ahead of the Showcase event, we’re sharing an exclusive preview of some of fantastic work that’s been carried out by awardees, aimed at improving the clarity and accessibility of information about data access processes to enhance researcher and public understanding, and build trust.
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Linking administrative data helps us understand how the public interacts with public services (such as hospitals, benefits systems and schools). The linkage of longitudinal data provides important and informative insights which allow us to understand how different components of our lives fit together- making it easier for leaders to use the information to make decisions in a more joined up way.
ECHILD (Education and Child Health Insights from Linked Data), is a collection of longitudinal, administrative datasets from NHS services, state school education, and children’s social care services for the whole population of children and young people in England. The purpose of the project is to understand the complex inter-relationships between child health and education. There are a range of important research questions that are being answered by the project, such as how changes to child benefits influence a child’s readiness for school and the child’s health, how chronic liver disease in childhood relates to cognitive development and if the special educational needs provided by a school can improve health outcomes.
The funding provided by HDR UK supported this amazing project through the adoption of the Transparency standards, by the creation of a new website, which includes a visual animation of what ECHILD is, and ensuring it is accessible to all stakeholders (including researchers, and members of the public). The ECHILD team also held a training event to engage with the ECHILD community Introduction to ECHILD: Linked data from health, education and children’s social care (ncrm.ac.uk).
Research Data Scotland (RDS) is a not-for-profit charitable organisation created and funded by the Scottish Government, and a partnership between leading universities and public bodies. They are working to provide a single point of contact for safe and effective access to secure datasets in Scotland.
A new brand identity was launched in May 2023 with a focus on providing transparency of data access processes for both members of the public and researchers alike. The brand values which have guided RDS’s work are centred on providing clarity, encouraging simplicity, and building public trust. These values closely align with the aims of the HDR UK Transparency Standards, particularly around transparent application processes and criteria (Standard 2) and consideration for target audiences (Standard 4).
With funding from HDR UK, RDS commissioned award-winning production company Media Co-op to create three short graphic animations targeted at both researchers and members of the public. These videos introduce three topics that have generated substantial interest among RDS users: Trusted Research Environments, data linkage and synthetic data. The project also incorporated feedback from the Scotland Talks Data public panel, run jointly by RDS and the Scottish Centre for Administrative Data Research (SCADR), ensuring appropriate and accessible language.
All animations are licensed under Creative Commons Non-Commercial Share Alike 4.0 to allow other organisations to share and adapt them with attribution. View the final animations on the RDS YouTube channel:
To honour our commitment to creating accessible content, BSL versions of all three animations are also available:
Our Future Health is the UK’s largest health research programme, designed to help people live longer and healthier lives through the discovery and testing of more effective approaches to prevention, earlier detection, and treatment of disease.
The programme has established an access process to enable secure access to data by researchers. To enhance both researcher and public understanding, they have used the funding awarded by HDR UK to create an engaging illustrated video that explains the process. The simple and digestible video is designed to ensure accessibility for all users, including those with disabilities and English as an additional language.
This project aligns closely with all six of the transparency standards. The content developed will also highlight the value of transparency of data use and ensure that researchers are aware, in advance, of their obligations and the information that will be made available to the public.
If you or your organisation are interested in hearing more about this programme of work or have an interest in improving transparency in data access, then please reach out to our Information Governance team at informationgovernance@hdruk.ac.uk
