Citizens, Seamlessness, and Care - Inter-relationships and Inter-operability Michael Rigby Emeritus Professor of Health Information Strategy Keele University, UK Senior Lecturer, Nordic School of Public Health

The Clear Drive to Integration Fragmentation bad for care IT has integrated health enterprises Increasing integration of health domains Citizens use distributed IT Citizens travel Increase (international) interoperability

The Need for Reality Check Increasingly doing the obvious more and better can be dangerous  Cars, buildings, drugs Are we becoming seduced by technology, led by experts? Need reality check: Revisit Need Put Citizen at Centre

Self-Isolation of Health Domain Health IT innovation seen lagging behind:  ATM; Amazon; supermarket point-of-sale Health working within itself Hence move to European health interoperability to match e.g. banks Matched to citizen travel

Health and the Citizen Most citizens need Healthcare at home Most Health-dependent citizens do not travel far Most health-vulnerable citizens weak on IT and IT access Citizens see Health sector as isolated and inflexible

Traditional View of Health Sector Tertiary Hospital Acute Hospital Community Hospital Primary Care HEALTH

Needy Citizen’s World CITIZEN Informal / Neighbour Carers Family Community Groups Frail elderly, post-trauma, mentally ill, cancer patient, etc.

Make a Poor Match CITIZEN Informal / Neighbour Carers Family Community Groups Tertiary Hospital Acute Hospital Community Hospital Primary Care HEALTH

Social Care just as Important CITIZEN Informal / Neighbour Carers Family Community Groups Tertiary Hospital Acute Hospital Community Hospital Primary Care Meals Cleaning, etc. Social Work Day Care Specialist HEALTH SOCIAL CARE

Often other Services Too CITIZEN Informal / Neighbour Carers Family Community Groups Tertiary Hospital Acute Hospital Community Hospital Primary Care Meals Cleaning, etc. Social Work Day Care Specialist HEALTH SOCIAL CARE HOUSINGEDUCATION

What should Interoperability Bring? The Natural Temptation  Increasing technical linkage  National and international movement  Inter-operability not just Read Only  Across Languages, etc..  Empower the European Citizen

What should Interoperability Bring? Citizen at Centre  Link health agencies and actors  Integrate all services round ‘Care’  Common care aims and care plans  Diaries and Schedules  Cross agency communication  Common terms and meaning  Empower the Citizen in Europe

Heading to Complexity International DISTANCE COMPLEXITY Technical Issues Health Practice Local

Not Meeting Most Frequent Need DISTANCE FREQUENCY of NEED Patient Benefit: Health seamlessness Local International

Not Meeting Most Frequent Need DISTANCE FREQUENCY of NEED Patient Benefit: Health seamlessness Patient Benefit: CARE seamlessness Local International

Addressing the Wrong Challenges DISTANCE COMPLEXITYFREQUENCY of NEED Patient Benefit: Health seamlessness Technical Issues Health Practice Patient Benefit: CARE seamlessness Local International

Refocus the Challenges LocusExample Inter- linkages Issues InternationalRequest for previous history Post-treatment discharge report Elective cross-border care Technical standards Professional practice Language Access and Usage rules Data Governance Patient identity Author identity Professional terms Practice patterns Professional responsibilities Care mandates; handover Quality Liability and redress

Refocus the Challenges LocusExample Inter- linkages Issues Local Care Economy – cross-agency Integrated care of elderly person Child abuse protection Technical standards Terminology Record styles Third party data Consent Trust in Access and Usage Data Management

Time to Rethink Put citizen benefit first  Frequency, depth of benefit There are still challenges to tackle Still opportunity for European benefit Health as “a state of physical, mental, and social wellbeing and not merely the absence of disease or infirmity” Inter-operability to Integrate Care