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Identifying and appraising promising sources of UK clinical, health and social care data for use by NICE

What do we want to know?

This report aimed to aid the National Institute of Health and Care Excellence (NICE) in identifying opportunities for greater use of real-world data within its work. NICE identified five key ways in which real-world data was currently informing its work, or could do so in the future through:

  1. researching the effectiveness of interventions or practice in real-world (UK) settings 
  2. auditing the implementation of guidance
  3. providing information on resource use and evaluating the potential impact of guidance
  4. providing epidemiological information
  5. providing information on current practice to inform the development of NICE quality standards.

This report took a broad definition of ‘real-world’ data and created a map of UK sources, informed by a number of experts in real-world data, as well as a literature search, to highlight where some of the opportunities may lie for NICE within its clinical, public health and social care remit.

Who wants to know?

This report was commissioned by the NICE, although the findings are likely to be of wider interest to a range of stakeholders interested in the role of real-world data in informing clinical, social care and public health decision-making. Most of the issues raised surrounding the use and appraisal of real-world data are likely to be generic, although the choice of datasets that were profiled in-depth reflected the interests of NICE.

What did we find?

We discovered 275 sources that were named as real-world data sources for clinical, social care or public health investigation, 233 of which were deemed as active. The real-world data landscape therefore is highly complex and heterogeneous and composed of sources with different purposes, structures and collection methods. Some real-world data sources are purposefully either set-up or re-developed to enhance their data linkages and to examine the presence/absence/effectiveness of integrated patient care; however, such sources are in the minority. Furthermore, the small number of real-world data sources that are designed to enable the monitoring of care across providers, or at least have the capability to do so at a national level, have been utilised infrequently for this purpose in the literature.

Data that offer the capacity to monitor transitions between health and social care do not currently exist at a national level, despite the increasing recognition of the interdependency between these sectors. Among the data sources we included, it was clear that no one data source represented a panacea for NICE’s real world data needs. This does highlight the merits and importance of data linkage projects and is suggestive of a need to triangulate evidence across different data, particularly in order to understand the feasibility and impact of guidance.

What are the challenges in mapping the landscape?

There exists no overall catalogue or repository of real-world data sources for health, public health and social care, and previous initiatives aimed at creating such a resource have not been maintained. As much as there is a need for enhanced usage of the data, there is also a need for taking stock, integration, standardisation, and quality assurance of different sources. This research highlights a need for a systematic approach to creating an inventory of sources with detailed metadata and the funding to maintain this resource. This would represent an essential first step to support future initiatives aimed at enhancing the use of real-world data.

How did we get these results and what are the key limitations?

The map of data sources was created from a search of the literature as well as expert interviews with key stakeholders. With guidance from NICE, the map was refined and sources were selected for in-depth profiling; further literature searches were conducted.

Therefore this is not a systematic map of real-world data sources, but is an expert driven map that was created to reflect the needs of NICE. The map was constructed in 2015 and therefore some important developments in the real-world data landscape or changes to individual sources may have occurred but may not be fully captured here. Furthermore, the usage of real-world data within NICE is also likely to have changed since the evidence in this report was collected. For example, NICE is a lead partner in the GetReal consortium, which aims to incorporate real-world data into the development of pharmaceuticals, although this strand of work is not reflected here in this report.

For more information please email Dylan Kneale: D.Kneale@ucl.ac.uk

This report should be cited as:
Kneale D, Khatwa M, Thomas J (2016) Identifying and appraising promising sources of UK clinical, health and social care data for use by NICE. London: EPPI-Centre, Social Science Research Unit, UCL Institute of Education, University College London.
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