Research Data Standards Peter Knight Deputy Director – Research Information and Intelligence 3 rd September 2013 DH – Leading the nation’s health and care

2 DH – Leading the nation’s health and care Data Standards in Research To response to Royal Society of Chemistry - ChemSpider database: The Department of Health welcomes the idea and has a similar initiative underway, via the, National Institute for Health Research; This initiative started because: Different concepts / different points of the research cycle An example is: “Start Date” – 14 definitions

3 DH – Leading the nation’s health and care Data Standards in Research Setting the scene for change: NIHR Information Systems Strategy 2013: “The expectation for each NIHR Business Unit is that they will work locally to adopt data standards that enable data integration wherever possible” Including 13/14 objective: Develop Data Standards Group and issue initial draft of NIHR Data Dictionary NIHR Vision, Strategy, Actions and Metrics plan (VSAM): identifies development and delivery of consistent data standards as a key action underpinning strategy for optimising the NIHR research system.

4 DH – Leading the nation’s health and care What the work is happening in the NIHR Aims Creating a consistent set of core data standards across the NIHR, promoting their adoption and use within agreed timeframes. Driver A common need to work more effectively with the same information and report it consistently to stakeholder and the Department. Benefits Reduce time incurred by DH in reconciling information provided from different parts of the NIHR; Improve interoperability between NIHR organisations, resources can spend time on other value-adding activities; Improve researchers’ experience – data is entered once then reused; Increase the attractiveness of the UK research offering (a) attracting further investment, b) as a good place to carry out research); Enhance the research and international presence, supporting the “health and wealth” remit and specifically the IS Strategy goals.

5 DH – Leading the nation’s health and care Guiding Principles of the work PRINCIPLE 1 Data standards in use across NIHR should be centrally held, managed and made readily accessible PRINCIPLE 2 The Data standards across NIHR should be driven both bottom up, enforcing standards at data collection phase and top down, enforcing data standards applied to all centralised DH reporting PRINCIPLE 3Use of existing credible externally maintained and managed standards, whereby NHS and Health data standards should generally be adopted where ever possible PRINCIPLE 4 Establish a NIHR Core Data Model PRINCIPLE 5 The concept of master data management should be implemented for all standards PRINCIPLE 6 Collaborative Framework

6 DH – Leading the nation’s health and care Data Standards in Research This work has recently developed and being piloted; Good progress is being made on building a core data set for the NIHR; An example is the NIHRInfo Project established to utilise the core data set and establish for the FIRST TIME a relevant pan NIHR research view of information.