Architectures for Sharing Information between Health and Social Care: The case of discharge summaries Dr Nick Booth Visiting Fellow Newcastle University Business School

General Practitioner Terminology Decision Support Health Architecture Consultation Dynamics English National Programme for IT English Department of Health Health and Social Care Information Centre

Kings Fund

New reality Demographic reality of ageing for health and social care – Life expectancy is increasing – Older people with multiple and complex conditions will be expensive to care for – Shift of care closer to home seems an inevitable consequence – Multiple care professionals from multiple organizations will be involved in care – Care will be a mixture of programmed care and unplanned care – Self care and co-production

Cottage Industry Electronic Record

Features 1988 Coded drugs conditions and procedures Associated free text Multiuser system Solely a practice based rersource Purpose Electronic prescribing Replace paper Disease register Clinical audit of quality of care Collaborative design by users Designed for doctors by doctors

Primary care GP Practice

Primary care GP Practice Secondary care Local Hospital Social care Community Care District Nurses Other Providers LOCAL CARE COMMUNITY The NHS in 1980s Paper communication Most care delivered by personal GP GP record from Cradle to Grave

Durham and Darlington EHR State of hospital EHR – Prime purpose fiscal/scheduling/performa nce/targets – Reporting statistics – Coding teams culled data from paper records for secondary use – Clinical records sparse – Based on single episodes (spells) – Not much interest in history Ethnographic study First ideas about summaries feeding a derived health record from multiple organisational documents And federation Conviction that EHRs must reduce work in collecting data And save time!

English National Programme for IT 4 super-regions Single system? National infrastructure Regional builds Top down integration Control clinicians “Toxic Diversity” of the NHS The degree of success of this programme has been written about extensively

What was never planned for: NHS and Social Care re-organisation will not stop Boundaries will shift at least every 5 years Experiments in single systems for all did and will not work Records must be patient-centred and fed from multiple organisations - In Health and Social Care

In other words an abandonment of top-down control of design national decrees of where lines are drawn have ceased Primary care MINE Secondary care YOURS Social care THEIRS Third sector WHO? Commercial care organizations ???? LOCAL CARE COMMUNITY Rational, coherent, uniform Toxic Diversity

Primary care MINE Secondary care YOURS Social care THEIRS Third sector WHO? Commercial care organisations ???? Primary care MINE Secondary care YOURS Social care THEIRS Third sector WHO? Commercial care organisations ???? Primary care MINE Secondary care YOURS Social care THEIRS Third sector WHO? Commercial care organisations ???? Primary care MINE Secondary care YOURS Social care THEIRS Third sector WHO? Commercial care organisations ???? Primary care MINE Secondary care YOURS Social care THEIRS Third sector WHO? Commercial care organisations ???? The integrationist view is no more And this is the habitat of an elderly patient close to home with multiple conditions

What other views are there? The Universalist view The web joins everyone up

Primary care MINE Secondary care YOURS Social care THEIRS Third sector WHO? Commercial care organisations ???? Primary care MINE Secondary care YOURS Social care THEIRS Third sector WHO? Commercial care organisations ???? Primary care MINE Secondary care YOURS Social care THEIRS Third sector WHO? Commercial care organisations ???? Primary care MINE Secondary care YOURS Social care THEIRS Third sector WHO? Commercial care organisations ???? Primary care MINE Secondary care YOURS Social care THEIRS Third sector WHO? Commercial care organisations ???? EVERYONE CAN SPEAK TO EVERYONE! Openness accountability transparency choice personal involvement

The big clinical issues today Lack of appropriate user involvement in design Poor understanding of clinical content in the HIT industry – Insufficient coherent business logic across hospital sites Flawed implementation of information and technical standards – Poor understanding of the nature of medical data Coding/ontologies/vocabularies incompatible – No coded information being sent to GP systems – No need therefore to embrace SNOMED-CT – No transformation of collection of hospital data

If we are not prepared to try to understand what is going on in the information systems we are disqualifying ourselves from any involvement in the governance of our information. But the “architects” need to communicate with us… Scary Architecture

K eep I t S imple S tupid! P retend I ts S imple S tupid!

Interoperability Architecture Framework 24 LayersDescription Information governance Ensuring the appropriate controls are in place when sharing information whilst still fulfilling the duty to share IdentifiersUsed to uniquely identify patients, organisations and individuals across NHS and social care. Codes and TermsProvides consistent meaning for querying and interpreting data. Document HeadingsStandard headings for displaying data. Data Structures (logical)Used to create consistent dataset definitions that can be re-used across different implementation standards or technologies. Coded terms used where appropriate. Messaging Structures (physical)Used to create implementation specifications that define how datasets are realised by different implementation standards and / or technologies.. Communication Patterns (logical)Used to specify the exchange of data structure instances between logical components. Technical Transport (physical)Interface mechanism by which data is exchanged between sending and receiving endpoints.

Codes and Terms Headings Data Structures Originator Subject/Patient Recipient Document Type Interoperability Architecture Framework Discharge Summary Discharging Physician GP Identifiers Acute Trust Local Practice Duties and relationships of care to be governed Technical Transport Logical Component End Point Logical Component End Point Information Flow Architect Policy Maker Implementer/ user Architect Policy Maker Implementer/ user Architect Policy Maker Implementer/ user Technical Systems Information Care Pathway

Introducing projections Godel, Escher, Bach : An Eternal Golden Braid Douglas R. Hofstadter

Codes and Terms Headings Data Structures Originator Subject/Patient Recipient Document Type Interoperability Architecture Framework Discharge Summary Discharging Physician GP Identifiers Acute Trust Local Practice Duties and relationships of care to be governed Technical Transport Logical Component End Point Logical Component End Point Information Flow Architect Policy Maker Implementer/ user Architect Policy Maker Implementer/ user Architect Policy Maker Implementer/ user Technical Systems Information Pathway DemandCapacity UtilisationCost Performance “Enterprise (Political) Architectures” Commissioning PrimaryAcute TertiarySocial Care Public Health Community Foundation Trusts NHS Agencies Private Sector Public Sector CommunityRegionThe Centre

Other community “spoke” systems Codes and Terms Headings Data Structures Document Type Subject/Patient OriginatorRecipient Discharge Summary Acute Trust Local Practice Discharging Physician GP Identifiers Duties of Care to be Governed End Point Logical Component End Point Logical Component Federation Hub Discharge Summaries are created in a session in the hospital and interpreted in another session in the Practice

Paramedics Accident and Emergency Emergency and Acute Care

Gerontologist Accident and Emergency Paramedics Pharmacy Pre and post operative nursing Orthopaedic Surgeon Emergency and Acute Care Pathology Radiography Operating Theatre

Gerontologist Accident and Emergency Paramedics Occupational Therapist Physiotherapist Social Worker Emergency and Acute Care Hospital Psychiatrist Gerontologist Pharmacy Pre and post operative nursing Operating Theatre Orthopaedic Surgeon Pathology Radiography

Gerontologist Accident and Emergency Paramedics Occupational Therapist Physiotherapist Social Worker Emergency and Acute Care Orthopaedic Surgeon General Practitioner Practice Nurse Community Nurse Social Worker Occupational Therapist Physiotherapist Discharging Physician Discharge Care close to Home Community Psychiatric Nurse Accident and Emergency Pharmacy Pre and post operative nursing Pathology Radiography Operating Theatre

Paramedic Report Some demographics Ambulance instrument data Medication A & E Report Path Lab. Pharmacy Admission Information from other NHS systems Hospital Medical Record Surgery Report Social Care Assessment Discharge Summary Primary Care Record Complex long term condition care-plan Amy’s Personal Health Information Diary Data Social Care Plan What is the relationship between these sessions and messages and records? Who “owns” what? How is the content of sessions agreed and re-negotiated? Sessions imply dynamic date integration at the point of need through the federation. Nursing Notes Rehabilitation Plan Occupational Therapy schedule Physiotherapy schedule Occupational therapy Community Nursing Plan Physiotherapy CPN Plan

Paramedic Report Some demographics Ambulance instrument data Medication A & E Report Path Lab. Pharma cy Admission Information from other NHS systems Hospital Medical Record Surgery Report Social Care Assessment Discharge Summary Primary Care Record Complex long term condition care-plan Amy’s Personal Health Information Dia ry Da ta Social Care Plan Nursing Notes Rehabilitation Plan Occupational Therapy schedule Physiotherapy schedule Occupational therapy Community Nursing Plan Physiotherap y CPN Plan Gerontologis t Accident and Emergency Paramedics Occupation al Therapist Physiotherapist Social Worker Orthopaedic Surgeon General Practitioner Practice Nurse Community Nurse Social Worker Occupation al Therapist Physiotherapist Discharging Physician Community Psychiatric Nurse Accident and Emergency Pharmacy Pre and post operative nursing Pathology Radiography Operating Theatre Codes and Terms Headings Data Structures Document Type Subject/Patient OriginatorRecipien t Discharge Summary Acute Trust Local Practice Discharging Physician GP Identifiers Duties of Care to be Governed End Point Logical Component End Point Logical Component Federation Hub