Digital Health and Electronic Medical Records: Aligning the EU and UK Agendas A UK VIEW Prof. Martin Severs

Presentation A Clinician View Major Drivers [Globally, Regionally and Nationally] Equity and excellence: Liberating the NHS [some drivers made real in UK English setting] Some pointers for alignment

A CLINICIAN’S VIEW

INFORMATION FOR POLICY: {Months to Years} INFORMATION FOR ACTION: {Days to Weeks} INFORMATION FOR CARE: {Minutes to Hours} CLINICAL PRACTICE: {Now} THE CONSULTATION: {Pt & Dr} PROFESSIONAL & ORG. REGULATION THE LAW CITIZEN

MAJOR DRIVERS

Major Drivers Autonomy of citizens; dominant moral force [choice, free movement, access etc] Plurality of providers; doctor to clinician to patient [expert patient] De-medicalisation of [mild] illness: self diagnosis, OTC meds, tele-help lines Reduce or curtail rises in costs: 70% costs are staffing, mechanise transactions

Major Drivers De-centralisation of illness management: home versus hospital Technology/computers as ‘actors’ in health care; decision support, medical devices Ageing Society: Multiple pathology and greater awareness of Imp – dis/func – hand/part continuum Chronic illness being the health challenge

INFORMATION FOR POLICY: {Months to Years} INFORMATION FOR ACTION: {Days to Weeks} INFORMATION FOR CARE: {Minutes to Hours} CLINICAL PRACTICE: {Now} THE CONSULTATION: {Pt & Dr} PROFESSIONAL & ORG. REGULATION THE LAW CITIZEN

Equity and excellence: Liberating the NHS

In 48 pages there are the following references: 54 to information; 29 to standards; 22 to data and 13 to records Embodies in an English NHS instance of most of not all of the major drivers except free movement

Informatics Standards [1] Explicit in the Information Strategy Autumn 2010 –Record Practice: Sharing Records with Patients [4b] –Information governance standards [2.11; 2.16; 2.13] –Standard interoperable format for records [2.12] –Record transfer [2.12] –Record Keeping standards [2.16] versus data collection standards [2.15] –Data standards that are person condition and treatment specific [2.16;5.7]

Informatics Standards [2] –Data standards for secondary use eg 2 nd Edition ICD 10 for PbR [3.19]: performance [2.8;2.9;2.10] –Data standards for workforce [4.33], events [5.12], services [2.21], –Standard for data compositions [2.16] –Business definitions eg definitions of use and recognition including records eg PROMS [2.7] & reconciliation with data standards [NICE [ ] vs WHO vs national audit vs etc]

Informatics Standards [3]: section 2.16 ‘Providers will be under clear contractual obligations, with sanctions, in relation to accuracy and timeliness of data. Along with commissioners, they will have to use agreed technical and data standards to promote compatibility between different systems. The NHS Commissioning Board will determine these standards but they will include, for example, record keeping, data sharing capabilities, efficiency of data transfer and data security’

Some Pointers to Alignment

The big picture is becoming clearer [final slide] Pan-government strategy is to adopt non-proprietary international standards A new single authority for informatics standards in the NHS: the NHS Commissioning Board ISB could be become the governance link and formal advisory body to Pan government, NHS CB, Europe and International bodies for all informatics standards in NHS England The technology office could become the data standards life cycle management lead for approved fundamental data standards in England and management link to International standards development organisations

Some Pointers to Alignment Standards must interact; so must their organisations; example IHTSDO which manages SNOMED CT HL7: Terminfo work product: Initial guide on how to use SNOMED CT in HL7 OpenEHR: Initial agreement to begin working together is complete; Closer working relationship is being developed WHO : Nearing agreement on cooperative work plan encompassing all WHO classifications (ICD-10, ICD-O, ICD-11, ICF, etc) LOINC and IFCC-IUPAC (NPU); Nearing agreements on laboratory test terminology cooperation IHE: Work to date driven by individual IHTSDO Members e.g. Netherlands Nictiz, GMDN Agency: Detailed discussions are underway re Linkage between SCT & GMDN DICOM: Long-standing working relationship Professional leadership of record keeping informatics standards and clinical governance of other informatics standards at national, European and International level could be improved

Alignment: requires managed tension Citizens & Patients Information Technology Health OrganisationsProfessions Successful Digital Health

CUI DISPLAY OUTPUT SPEC CUI INPUT Compositions Mapping Messaging Schema File transfer Central Collection / Repository Indicators and Metrics Algorithms / Calculations Secure Portal Policy DriversPatient Need Record Keeping Standards Dashboards Record Content Standards Statistical Standards Clinical Safety Testing Organisational Safety Testing Human Behavioural GuidanceOrganisational GuidanceTechnical Guidance Algorithms / Queries “QOF – like” measures Terminology & Record Data Standards Class Groups CitizenPatient & Clinician INPUT SPEC Record Classification Standards Decision Support & Patient CareOperational Management Algorithms / Queries Produced by John Varlow, & Martin Severs Version July 2010 © Information Standards Board 2009 Binding