1. Informatics Data Standards Programme – Suppliers Forum 29 Apr 2009

2. Some Recognised Issues with Datasets Costs and timescales of development and implementation The perceived bureaucracy associated with the approval and assurance process The burden of collection on the NHS and other service providers Existing flows are organisationally-focused instead of clinical or patient- focused: Only NHS Secondary Care activities are reported Only Inpatient, Outpatient and A&E care under the control of a consultant (although can report additional Allied Health Care Professional, Nurse or Midwife led activity) Some modification to include Independent Sector but not designed for this purpose No Primary Care or Community Care datasets included Not fit for purpose - Acute Commissioning Datasets only supports ~30% of expenditure. Calculation is that up to 80% of PCT face-to-face activity is from primary and community services Expectation that these would be automatically delivered as part of National Programme for IT and available via Secondary Uses Service (SUS)

3. Examples - Implementation of Datasets for Payment by Results The first priority for SUS was the implementation PBR to provide a transparent, rules-based system for paying NHS Trusts for the activity they undertake using a national tariff. Based on activity and adjusted for Casemix it ensures a fair and consistent basis for hospital funding rather than being reliant principally on historic budgets and the negotiating skills of individual managers Providers and Commissioners are given access to this information on line providing a consistent basis for negotiation and additional analysis facilities to be made available to providers and commissioners SHA Summary to show % missing primary diagnosis. If there is no primary diagnosis then the payment tariff can not be calculated thus … no payment can be made

4. Provides access to information on: Commissioning activity, Referral patterns, Outcomes, Prescribing and Quality and Outcomes Framework (QOF) Accessible to all GP practices, Primary Care Trusts (PCTs), Strategic Health Authorities (SHAs), other trusts and Public Health Observatories (PHOs) Implementation of Datasets for Practice Based Comparators With permission of the NHS Information Centre for Health and Social Care

5. Background to the Programme In recognition of these and other issues, the Health Informatics Review report, published in July 2008, said we will: Set up a major programme of standards development Address large and important dataset gaps within some healthcare settings, such as community and mental health, and for clinical outcomes and quality of care Create the technology and standards required to allow high quality local solutions to be integrated within hospitals and across care settings and a wide range of providers Carry out a full review of the existing NHS data model, Implement a rigorous process that makes sure existing standards are adopted Make sure that proposed new standards are planned and co-ordinated to minimise the burden of collection on the NHS Develop a process for managing the end-to-end process of standards development Make sure there are stronger mechanisms in place for the assessment, approval and implementation of such standards

6. Programme Goal and Objectives The goal of the Programme is to facilitate the provision of data standards solutions that will support a patient-centred NHS where there is choice, plurality of provision, close integration of health and social care, multi-agency and multi-professional care pathways, with a strong focus on quality of care. Programme Objectives: Deliver a set of projects to improve the way in which data is handled across the NHS, adult social care and other services as appropriate Ensure data is fit for purpose and that the right data is in the right place at the right time Ensure that data holds its truth as it moves through the system Reduce the burden of data collection on the NHS

8. Guiding Principles of the Programme Wherever possible, the information required for secondary uses is obtained or derived from data collected as part of the care process, thus avoiding duplicate collection of data Data standards support, and are aligned with, the different Care Professionals’ professional standards All relevant data standards are professionally endorsed by Royal Colleges, associations or the like There is a clear governance and end-to-end process in place, through which all data standards pass Sufficient guidance to allow implementation of a given data standard is supplied with the standard Data standards enable efficient delivery of patient care and data sets will be patient-centric wherever possible Confidentiality and security will be rigorously maintained in line with prescribed standards and processes

9. Programme Scope Streamlining the end-to-end data sets process Revise the end-to- end process for developing and agreeing data sets to support information flows Social Care Ensure that standards sponsorship and the need for social care consultation in relevant standards development is established Pathways Groups Use the patient journeys within the Darzi Pathways Groups as a basis for defining the key data or information concepts that need to be supported by national data standards Care Outcomes Measurements Prioritise and define data standards to measure clinician output and to support clinical quality measures Analysis & Currencies Develop updated, patient-centred units of care activity (“currencies”) and of national indicators and analytical tools (“analysis”). Logical Record Architecture for Health & Social Care Define required data structures and terms to be shared across health and related social care settings Data Sets Futures Define a replacement for Commissioning & Clinical data sets, including their extension to cover Primary, Community & Social Care “Requirements” Workstreams “Delivery” Workstreams Informatics Data Standards Programme Facilitate the provision of data standards solutions that will support a patient-centred NHS Informatics Review

10. Links to NHS Information Reporting Service (NIRS) Architecture development –Each programme to map to reference architecture Standards development (through Informatics Data Standards Programme) Information Governance (including pseudonymisation) Programme planning –agreement on a consolidated roadmap, including supply strategy and commercial approach; –commitment from each programme to guard against duplication or contention across programme areas; –a programme to co-ordinate training and support arrangements for users Programme Governance

11. NHS Information Reporting: Future State Landing Staging Data Collation and Processing NHS Analysis and Reporting Service Data submitted by all providers of NHS “acute” and Mental Health Care Extracts for Non NHS organisations User access Clinical Audit Data from primary care GP Extract Server Research Capability Server reports User access Clinical Dashboards User access National Applications (e.g. PDS, CAB, EPS, ESR etc.) QMAS User access NHAIS User access GP Extract Service Research Capability Programme Analysis and Presentation Data Sources Universal Data Warehouse

12. New Way of Working – A Logical Record Architecture for Health and Social Care and Datasets Futures The LRA will determine what data should be shared across multiple applications, how data will be managed, accessed and interpreted between independent information systems. This will facilitate improvements in assurance of standards ‘implementability’; portability of data; standards consistency; data standards quality assurance and validation processes. To include: A data dictionary, with SNOMED Clinical Terms bindings Logical data models plus explicit business objective and functional requirements statements Patient journey, care pathways and clinical workflow models Define replacements for Commissioning Datasets (CDS) that meet the information needs of a patient-centred 21 st Century NHS. It will also extend all Datasets from secondary care to other sectors such as community, primary and social care Will address immediate short-term data sets gaps by accelerating development of data sets for: Maternity, child health and child and adolescent mental health services Long-term conditions, initially diabetes and neurological Community, including older people and CAF / SAP

13. Pathways Groups outputs will help identify key requirements for the Logical Record Architecture Patient journey, care process or workflow & data flow models Requirements Statements Repository Generic care process model framework Data Dictionary (inc definitions for business concepts) Integrated logical models for records data, semantics and decision support Generic healthcare data model framework Logical Record Architecture Adopted international data standards Healthcare & Social Care Information Systems Mutually consistent national human user, service and applications interface specifications Pathways Groups Workstream Select & Define Pathway Analyse Pathway Key Processes Business Objectives Data/Information Flows Data/Information requiring national data standards development What data/information requires the development of national data standards? What type of national data standards need to be developed for this data/information?

14. Operational Testing and Piloting Five Stage Process Stage 1 – NHS Comparators (Maternity) Stage 2 – Data Discovery and Analysis Stage 3 – Operational Testing Stage 4 – Piloting and Prototyping –4a- Pilot an interim secondary uses solution –4b – Prototyping primary uses solution Stage 5 – DSCN Implementation Plans

15. A Pragmatic Approach to Implementation Approved requirement Stage 2 - Discovery and Analysis Stage 4a - Pilot Test Secondary Uses * Stage 3 - Operational Test Stage 5 - DSCN Implementation * Develop interoperability Updated Data Dictionary Input Data Specification Selected Provider Sites Vendors Integration test Stage 4b - Prototype Rollout * Develop SUS and reporting Fully Approved Standard * = Secondary Use Data Available ISB Full Approval ISB Draft Approval, ROCR guidance Statement of Need Stage 2 - Discovery and Analysis ISB Requirement Approval Analyse data requirement Strategic Outline Case (SOC) Outline Business Case (OBC) Full Business Case (FBC)

16. Working with suppliers Maternity: Euroking, System-C (eClipse), i-Soft (Evolution, Protos and Lorenzo), LPfIT (Cerner Millennium), SystmOne (TPP solution), SEND (Neonatal Applications) and RiO & GP Systems of Choice (GPSoC) – to gain agreements for the provision of software analysis against the proposed Maternity Dataset. Some suppliers may be asked to support the development of a beta release for service providers participating in Operational Testing, covering any gaps exposed in earlier analysis to fulfil the completeness of the proposed dataset. Child Health: including SystmOne (TPP solution for NME Programmes for IT), CHIA (Child Health Interim Application – awaiting RiO solution for London Programme for IT) and GP Systems of Choice (GPSoCs). CAMHS: CareNotes (Strand Technology), RiO (CSE-Healthcare), CAMHS Reportage (Fry-IT), Millennium (Cerner), PARIS (In4tek) and Maracis. Lorenzo (i-Soft) and SystmOne (TPP) will also be considered in relation to CAMHS functionality. In all cases any other local or bespoke system that addresses gaps in commercial or NPfIT systems will be evaluated. Testing should take place across a number of localities and build on local best practice

17. Questions now … or later ? Monica C M Jones Head of Architecture and Data Standards The NHS Information Centre for health and social care monica.jones@ic.nhs.uk www.ic.nhs.uk