Category: ADR Wales, Health & Wellbeing

19 February 2021

New pathways in data acquisition

This ongoing research is being undertaken by ADR Wales.

ADR Wales has positioned itself not only as a leader in delivering impactful research that has shaped government policy and improved the day-to-day lives of Welsh citizens but also as an expert in acquiring the data needed for research.

A mission of the organisation is to enable large-scale acquisition of administrative data to be held in its partnered SAIL Databank (Secure Anonymised Information Linkage), so that researchers all over the UK and the world may also tap into this rich data source, answering the most pressing questions facing society.

Addressing the need

ADR Wales has built its expertise in data acquisition by structuring a dedicated team that can facilitate a streamlined process, creating a pathway to efficient data transfer. This pathway was built upon many lessons learned from prior investments. In previous iterations of ADR Wales and its partner the SAIL (Secure Anonymised Information Linkage) Databank, data acquisition was attempted on a project need basis. Without a dedicated team, lone researchers and administrators might have spent months or even years trying to gain access to datasets, likely getting stuck in issues of governance. Further, if the data owner was an organisation that was time and money poor, the researcher might end the journey empty-handed.

Finding solutions

ADR Wales has created a team led by experts on either side of the data sourcing transaction; a data sourcing manager based within ADR Wales’ Welsh Government operation and a data acquisition manager close to SAIL – both expertly placed to address issues and questions in the acquisition process. Joining these positions are legal, technological and operations colleagues that can lead in their respective areas while also working with their reciprocal counterparts from the data owner to ensure data acquisition happens in a smooth and timely manner.

Cynthia McNerney, ADR Wales’ Head of Data Acquisition and Provisioning, who works alongside SAIL, said:“Having a process owner to manage the technical aspects of the data acquisition—from liaising with data security and legal colleagues to the technical staff—provides data owners with a seamless single point of contact for data sharing.”

Together with a team embedded within government, it allows for previous relationships and work streams to be utilised in the acquisition process.

Matthew Davies, Data Sourcing Manager and Linked Data Analyst for ADR Wales in Welsh Government, said: “ADR Wales is great example of what can be achieved when academics and government work closely together. The embedded team within Welsh Government can use its connections to ensure that data needs are met for vital academic research.”

ADR Wales has focused on acquiring anonymised data from large organisations within government, such as the Ministry of Justice and Children and Family Court Advisory and Support Service Wales (Cafcass Cymru) and Cafcass England. The research results stemming from these data acquisitions show the potential value of administrative data from across the justice system, enhancing the evidence base needed to help tackle key social and justice policy issues. Research reports using the Cafcass Cymru data, for example, have been the first to link family court records to maternity and health data in Wales. The availability of the Cafcass data opens up a range of research possibilities to better understand, provide evidence and ultimately improve the lives of those involved in the family justice system.

Collaborating with other big data investments shows that ADR Wales does not operate as a silo delivering its own outputs, but rather it aims to find a shared benefit for both parties, which drives the data acquisition process forward.

ADR Wales is able to negotiate these large transfers of data by giving organisations a certain level of assurance, which is built upon its ongoing partnerships with the most respected of big data organisations like the NHS and the Welsh Government. The administrative data that ADR Wales acquires is kept in the SAIL Databank, which has stored Welsh NHS patient data since 2007. Any new potential relationship with a data owner can see this long history of data banking, linkage and protection and feel secure knowing that their data is kept safe.

Building on that level of trust, the SAIL Databank has garnered new benchmarks in data linkage and protection, confirming its role as a comprehensive data platform. In January 2020 the databank became an Accredited Processor under the terms of the Digital Economy Act 2017, and in July it completed the NHS Data Security and Protection Toolkit assessment to demonstrate performance against the National Data Guardian’s 10 data security standards.

The results

All combined—a dedicated data acquisition team, a strategy of collaboration for shared benefit, and assurance built on long-standing partnerships—these strategies create fast data acquisition, relatively speaking. (Fast data acquisition is about six months.) Acquiring data quickly is important for successful research projects because funders and stakeholders generally cannot grasp why data acquisition takes so long, as the transfer of data seems like a simple transaction. Timely data acquisition also ensures that the initial enthusiasm of creating a new partnership and sharing data does not get lost as time passes.

In recent months, data acquisition has sped up even more because of Covid-19 and the urgency to deliver research results to Welsh Government’s Covid-19 Technical Advisory Group (TAG) and the UK’s Scientific Advisory Group for Emergencies (SAGE). Many new datasets have been secured for Covid-19 research and the frequency at which existing datasets are transferred to the SAIL Databank has quickened, some changing from quarterly to daily updates of the data available to researchers.

As the Covid-19 outbreak continues, ADR Wales and the SAIL Databank will continue to place a priority on Covid-19 related research projects and support related data acquisition.

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