Developing the Data Value Chain

1. Developing the Data Value Chain April 2019

2. However……..

3. “England has the fifth most transparent health system in the world and our aim is to be number one. At the same time unnecessary demands and burden are placed on front-line staff by asking for data in inconvenient formats, by different health regulators asking for the same data in different ways, and not using automated data collection systems. In short there is a huge burden on data gathering whilst not making the best use of the data gathered.” - Matt Hancock, Secretary of State for Health April 2019

4. Current State Overview – Across the Whole System Increased Cost: Design Debt, Demand Suppression, 2000+ Databases, Multiple Manual Process Flows, limited linkage of data Burden of top 11 national collections…? £££ Duplication of effort and Variability of collection = variability of data outcomes Data Processing Data Landing Processes 100’s of Collection Specifications Data Storage (‘00s of locations) 1000’s of Unique Data Models Sources of Data ££££ Duplication in Collection Bespoke V Manual NHS Trusts Bespoke V Manual Bespoke V Manual 3rd sector providers to the NHS • Data Storage: • Many locations • No record of what is where • No common metadata • No store of info about data processed • Data Processing • High variation • Specific coding of • Linkage routines • No common store • No common metadata • Inconsistent registers • Collection Specs: • High variation • No linkage/re-use • No common store • Any metadata – manually stored • Stored in excel/PDF • Data Landing Processes: • Bespoke Manual coding • High variation • No linkage/reuse • No common store • No common metadata • Data Models: • High variation • No linkage • No common store • Metadata manually updated • Stored in PDF’s etc £££ Multiple stores to access for different data. Difficult to link ££££ Multiple assemblers and stores with no visibility to consumers Private provider to the NHS • Overall issues – at national and local levels: • Data collected differently based on use – clinical audit, publication, operational management, clinical management, research • Manual Bespoke processes to enable linkage between individual data sets • No view of duplication; No view of linkage/lineage • No link between Business Definition and Technical Definition or consistent integration with ontologies/registers • No ability to impact assess changes to data items or definitions • No common meta data stores, any meta data is bespoke and manually maintained – quickly out of date • Questions we cannot answer/analyses we cannot do • GDPR compliance…..a challenge £600m/annum Social Care Private Healthcare provider

6. How to change this…? Mindset shift in how we think about data Three Key Elements: • Whole system approach - define the Data Value Chain…..where is/are the best place(s) for each activity? • Move towards a ‘patient-centric’ collect once/use often data collection philosophy – not policy or ‘topic’ centric • Driven by a consistent Modular Data Architecture

7. Data – the most valuable thing in the NHS we know almost nothing about Individual data items or ‘attributes’ e.g. ‘date of birth’ Groups of attributes create re-usable ‘modules’ e.g. name/age/DOB Groups of domains and modules create useable data sets Reuse of modules creates homogeneity Use of strong tools enables visibility, reuse, automatic update – lowers burden for all and increases value Groups of modules create a ‘Domain’ – e.g. all the data associated with a referral. But.. Data dictionary in HTML V3… Lack of structured modelling… Manual lineage & linkage

8. Health and Social Care Current Position Data is collected by various national and local bodies No top down integrated view Highly manual processes for finding and linking data Limited reuse of modules or attributes Some standards/lots of inconsistency Leading to: Duplicate data capture and storage (burden), in-consistency and in-efficiency, Data Lag

9. PoC Overview Data Processing Data Landing Processes 100’s of Collection Specifications Data Storage (‘00s of locations) 1000’s of Unique Data Models Sources of Data Bespoke V Manual NHS Trusts Bespoke V Manual Bespoke V Manual 3rd sector providers to the NHS Collibra Proof of concept Single View of Data Dictionary & Ontologies, End to End Collaboration/Governance. Enable national flows AND local variations/local flows to be linked – machine and human readable views Private provider to the NHS Power Designer Data models – as is and thematic design for future transformation Ab Initio Proof of concept Metadata Hub All meta data harvested, automated, live Social Care • Document ‘as-is’ – know what is collected, where, when, characteristics, rules • Identify duplication, opportunities to streamline, reduce burden • Demonstrate end to end linkage from collection to dissemination – fully searchable capability • Manage new data requests intelligently against current data available • Tools are live, digitised meta data, documented data dictionary – nothing manual or out of date • Design integrated modular data flow for future – digital event driven Private Healthcare provider 11 11

10. Diagrammatic Summary of Future State Data Collection showing patient-centric, faster, richer data = Mandatory Data Module(s) e.g. demographic data, referral data = Specific Data Module(s) Day 1 2pm Day 1 2.30pm Day 1 3pm Day 1 5pm Day 3 2.30am Day 6 11am Day 7 11am Day 2 23.00 4pm 111 ED X-ray Ward Theatre Ward Social Care Support package Discharge Patient Pathway Data Modules create Data Packets, Sent in by systems 5 5 3 6 7 6 6 Meds Meds XRAY 1 2 4 5 5 8 9 Theatre mgmt ECDS XRay Observations Observations ADL 111 1 3 5 6 6 6 6 8 Central Data Platform 2 4 5 5 5 7 5 9 Snapshots in context - slice and dice for different purposes – by organisation/symptom/treatment/wait-times/outcomes 13 13

11. High Level Example Modular Data Flow Architecture From Source to Use 111 service provider Emergency Dept 1. Patient Pathway traverses pathway cross organisational, operational and clinical boundaries Radiology Dept 4. Recipient Hubs = any agreed end point e.g. LHCRE, PHE, NHSI, NHSE, NHS Digital DPS etc etc Modules land and link to others for same patient creating longitudinal pathways. 2. Modular data flow One or more specified data modules flow when events trigger e.g. call ends, referral, discharge, admission, treatment etc Theatres Dept Ward DPS Social Care 3. Design Principles • Support current and future data capture (Batch, Message, API etc..) • Provides common, secure capabilities for De-id /Re-id, Consent, Citizen ID, Staff ID, Record Locator • Deliver local and national heath care data through a consistent interface and tooling • Provide assurance for patient data, GPDR, Data Sharing and Access through agreed IG / Legal framework and tooling