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Clinical review: The impact of data released through the Data Access Request Service

Background


Collecting data does not, by itself, improve anything. It needs to be part of a system. Figure 2 shows a data lifecycle (or value chain) model, based on work by Freidman et al (2017). NHS Digital has a role at several stages in the lifecycle, but does not bring about the change that ultimately improves health and care. The sections below outline NHS Digital’s role at each stage in the lifecycle.

Figure 2: Life cycle of data for secondary uses

Figure 2: Life cycle of data for secondary uses

Collect

It is important that high quality data is collected. Bad data leads to bad decisions. NHS Digital set standards for data, which give clear guidance on:

  • what data is required
  • what format the data needs to be in
  • how to submit the data

In many cases, data is collected automatically, through systems that the NHS already uses, such as through the electronic health record (EHR) in a GP surgery. This helps staff by keeping the amount of extra work to a minimum.

Assemble

Data is assembled from around the health and care system. It is always collected and stored securely and in line with the law. Data quality is checked against standards and feedback is provided if it needs to be improved. The assembly process is currently being improved through the introduction of the Data Services Platform.

Analyse and interpret

Once the data is put together and checked, it can be used to improve the health and care system. Other organisations, outside NHS also use our data:

  • decision support – to help staff make complex decisions using data
  • predictive modelling – using data to predict something that is likely to happen
  • benchmarking – spotting the high and low performers, to target support or develop learning opportunities
  • health surveillance –tracking the spread of diseases or the impact of particular treatments or interventions
  • comparative effectiveness research – assessing the impact of different treatments from routine data or helping with clinical trials

Access

Insights won't improve the NHS unless they are shared. NHS Digital publish data and insights in several ways.

We publish almost 300 statistical publications (open data) each year. The Appendix shows download statistics for the 20 most popular publications in 2018. In total, statistical publications were downloaded over 350,000 times in 2018. In turn, these publications often generated media coverage.

Publication Number of stories
Mental Health of Children and young People 685
Health Survey for England 310
Prescribing for Diabetes 234
National Child Measurement Programme 197
Child Vaccinations 170
GP Appointments data 133
Accident and Emergency (HES) 17/18 128
Maternity Statistics 17/18 127
Admitted Patients Care 17/18 122
Quality Outcomes Framework 121

Table 1 - Number of occasions a statistical publication generated media coverage

We publish over 1,000 clinical indicators, which track individual measures relating to quality, outcomes and population health over time and produce:

We also release patient-level data through DARS, supported by the Independent Group Advising on the Release of Data (IGARD).

DARS enables organisations to apply for patient-level data that is held centrally by NHS Digital. DARS deal with requests for data sets, linked data sets, tabulations, bespoke linkage and patient tracking. They can provide access to a wide range of products and services, and received 995 requests in the year between December 2017 and December 2018. Figure 3 shows the number of requests by each type of organisation. Figure 4 shows the range and frequency of products that were requested in that period. Most applications request more than one product, so the number of product requests is greater than the number of applications.

 

Download the data for this chart
Download the data for this chart

The DARS team only supply sensitive patient-level data to organisations that look after it according to Information Governance (IG) requirements, and that use it to improve health and care services. Their aim is to prevent the inappropriate release of data, while making the data dissemination process as efficient and timely as possible. 

The process is split into application, approval, access, audit and deletion. The IGARD reviews all novel, contentious or potentially repercussive applications for data. 

Unlike with data disseminated openly by NHS Digital, it is sometimes possible to identify the impact that data released through DARS has had. Each application includes a benefits statement. This is a free text entry outlining the benefits that are likely to arise from the data dissemination. If the application is for a renewal or extension, then a yielded benefits statement is required. This is another free text entry outlining the benefits that have been realised following the initial dissemination. Last year, 422 applications contained a completed yielded benefits statement.

All successful applications are recorded in the DARS Register of Approved Data Releases, which is publicly available.

Change

Once insights are released, the health and social care system can start to make improvements. These changes are of all sizes – from an individual to a whole country level.

NHS Digital works with organisations across health and social care to help them understand our insights, and to make sure that they can deliver effective change.

Individual patients or members of the public can use data to make decisions about their own health and care, or that of people they care for, including things like choosing a specialist doctor, changing their habits based on new research, or advocating for change.

Health professionals and clinicians can use data to better understand their patient groups, and to identify opportunities to improve their services.

Local provider organisations such as hospitals or GP practices, can data to plan their services better and more efficiently, as well as monitoring their performance against other providers like them.

National and regional commissioners and local authorities can use data to better understand the changing needs of the population, and to monitor the impact of their policy and work.

Central NHS organisations can use data to understand population needs and funding requirements, including how these are changing over time. They can also monitor quality of care, using indicators.

Research organisations such as universities, charities, think tanks and the life sciences sector, can use data to research new areas, which helps to better understand a disease or condition, as well as developing new medicines or treatments. They can also assess the efficacy, and cost versus benefits, of individual interventions, or even compare whole health systems.

Last edited: 15 April 2020 1:49 pm