Sabine Koch Karolinska Institute, Sweden (Friday, 7.30, Keynote)

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Health Informatics Centre
a collaboration between Stockholm County Council and KI
Integration between health and social care
- the pivotal role of primary care and IT
Sabine Koch, Professor and Director
Health Informatics Centre, Dept. of LIME and Dept. of Medicine (MedSolna), KI

2. Foto: Fröken Fokus
Agenda
• Swedish health and social care and the
National eHealth strategy
• What renders integrating health and social
care specific? - Results from an ESF
exploratory workshop
• Example projects
Sabine Koch, 2011-11-24

3. Foto: Fröken Fokus
Swedish Health and social care
• 9 million inhabitants
• 21 self-governed regions/county councils with
responsibility for hospital and primary care
• 290 self-governed local authorities with
responsibility for healthcare of the elderly and
functionally disabled and for social care
• Legislation of healthcare on a national level –
the Parliament
Sabine Koch, 2011-11-24

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Hospital and primary care
Sabine Koch, 2011-11-24

5. Foto: Fröken Fokus
IT costs as part of turnover
2004-2010 (%)
Source: Jervall L, Pehrsson T. IT-stöd i landstingen (IT support in County Councils), Sveriges Kommuner och Landsting (SALAR), 2011

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Changes in county council costs
for IT (in SEK) 2009-2010
• Communication • -4,7%
• Telephony • -0,2%
• Hardware • +5,5%
• Software • +6,8%
• IT services • +7,4%
• Total • 7 335 714 SEK (¨5 000 000 in 2008)
• IT staff • + 7,1%
• All IT costs • + 5,7%
7,335 mSEK (1,425 mNZD)
Source: Jervall L, Pehrsson T. IT-stöd i landstingen (IT support in County Councils), Sveriges Kommuner och Landsting (SALAR), 2011

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National IT Strategy
Applications
• My Healthcare Contacts MVK (access to national health care
information, appointment scheduling etc.)
• 1177 (national telephone and Internet advisory service)
• NPÖ (National Patient Summary)
• PASCAL (National Medication List)
• SIL (National Drug Database)
Basic structures
• Common technical platform
- Sjunet (National communication network, since 1999)
- HSA registry (Health Services Address registry)
- SITHS (National security solution/e-certificate)
- BIF (Basic Services for Information Maintenance)
• NI, National information structure (ready 2009)
• TIS, Technical information structure (EN13606/EHRcom)
• IFK2, National Quality Registry Infrastructure
• National terminology incl. SNOMED CT (member of IHTSDO)
• Patient Data Act (since July 2008)
Source: Swedish National eHealth Strategy, 2006 and its yearly updates 2007-2010

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IT – an integrated part of
Swedish healthcare
• EHR
– 100 % of all
documentation
in primary
care,
hospitals,
psychiatry is
electronic
– >90 % in
ambulances
(with direct
communication
to hospitals)
Source: Jervall L, Pehrsson T. IT-stöd i landstingen (IT support in County Councils), Sveriges Kommuner och Landsting (SALAR), 2011

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WHY?
• Clinical champions supported by strong
administrators
• Collegial pressure / peer influence/ larger
group practices in PC
• Use of an unique national patient identifier
• Culture – ”Sweden as high-tech innovative
country”
• User-centricity
Sabine Koch, 2011-11-24

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Trend towards one single EHR
system
• 1994
– 27 different
products
• 2010
– hospitals
4 products
comprise 89%
of the market
– primary care
6 products
comprise 95%
of the market
Source: Jervall L, Pehrsson T. IT-stöd i landstingen (IT support in County Councils), Sveriges Kommuner och Landsting (SALAR), 2011

11. Foto: Fröken Fokus
IT an integrated part of Swedish
healthcare
• e-Prescriptions
– 80 % of all pharmaceutical prescriptions in Sweden are issued and
transferred electronically
+ Only one national provider of pharmacy retail from 1970-2009
(Apoteksbolaget AB)
- Decision support during prescription process is still lacking behind: In
Sweden some 3000 deaths yearly are estimated to depend on medication
errors.
Sabine Koch, 2011-11-24

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IT an integrated part of Swedish
healthcare
• National Quality Registries
• 60+ national quality registries containing individual-level data on
diagnoses, treatment interventions and oucomes, organized by
condition
+ Decentralization
+ Peer influence and practical use
+ Quality assurance – can be used for research
- No interoperability between registries
- Integration with EHR is lacking
Sabine Koch, 2011-11-24

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National eHealth Strategy 2010

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Status 2010
National level Regional level
• County councils/regions integrate
Strategic focus on e.g. healthcare services between different
providers; offer e-services for citizens
• Process-orientation and business • Local authorities partly use the same
development EHR system for healthcare
• Citizen-centricity and personalised e- documentation; offer e-services for
services citizens; own documentation for social
• Include social services to coordinate services; mobile tools for time planning
development within health and social • Integration between health care and
care social care documentation far from
• Secure continuity of care between being reality, but digital systems for e.g.
different providers and take away discharge planning are implemented +
organisational barriers telemedical solutions for shared care
planning in some places
• Strenthen privacy of the individual
Sabine Koch, 2011-11-24

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Integrated EHR
Source: Jervall L, Pehrsson T. IT-stöd i landstingen (IT support in County Councils), Sveriges Kommuner och Landsting (SALAR), 2011

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Strategic plan for municipalities
2011-2012
Catharina Mann, SKL

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Size of Swedish municipalities
Catharina Mann, SKL

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National
National Information-
terminology structure
Kirsti Dahlman, CeHiS

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What renders integration of
health and social care
specific?
Sabine Koch, 2011-11-24

20. ESF Exploratory Workshop:
The Challenges of Developing Social Care Informatics
as an Essential Part of Holistic Health Care
ESF Exploratory Workshops
Each year, ESF supports approximately 50 Exploratory Workshops across all scientific
domains.
These small, interactive group sessions are aimed at opening up new directions in
research to explore new fields with a potential impact on developments in science.
The workshops, which usually last 1-3 days, have a wide participation from across
Europe and involve mature scientists as well as young, independent researchers and
scholars with leadership potential. The relatively small scale (in terms of people
involved) provides an ideal platform for focus on the topic and for all participants to
contribute to discussions and plan follow-up collaborative work. Interdisciplinary
topics are greatly encouraged.
http://www.esf.org/activities/exploratory-workshops.html

21. The idea
• Ageing population in Europe
• Consumer awareness and increasing
expectations
• Electronic record systems in social care are
emerging
BUT
• New research issues arise that need to be
identified and explored and that currently have
no discussion forum

22. M. Rigby

23. What is Social Care?
• Social work is a profession and a social science committed to the pursuit of social
justice, to quality of life, and to the development of the full potential of each
individual, group and community in a society. Social workers draw on the social
sciences to solve social problems. ...
en.wikipedia.org/wiki/Social_care
• Care services which are provided by local authorities to their residents, or which
are commissioned by local authorities (for example, from community & voluntary
organisations and from indepedent providers). ...
www.sath.nhs.uk/OurNHS/glossary.asp
• organized effort to help individuals and families to adjust themselves to the
community, as well as to adapt the community to the needs of such persons and
families
http://encyclopedia2.thefreedictionary.com/Social+care
P. Hill

24. ESF Exploratory Workshop:
The Challenges of Developing Social Care Informatics
as an Essential Part of Holistic Health Care
Key issues
-Management
-Record sharing
-Terminology and meaning

25. ESF Exploratory Workshop:
The Challenges of Developing Social Care Informatics
as an Essential Part of Holistic Health Care
Management

26. M. Rigby

27. Management
• Social care is both organisationally and
legally managed seperately from health care
Even in countries where health and social care are
provided by the same organisation, record
keeping is largely separated, not least due to legal
regulations
S. Koch

28. ESF Exploratory Workshop:
The Challenges of Developing Social Care Informatics
as an Essential Part of Holistic Health Care
Record sharing

29. Comparison
• Health care record • Social care record
 Medical  Social
 Narrow  Broad
 (partly ) Structured  Narrative
 about the individual  about the individual
 regulated by strict AND his/her
legislation environment
 regulated by less strict
legislation
• Personal health record
 Did we define it? • Patient diary
What’s that?
S. Koch

30. Who wants to share records?
• If collaboration is wanted, record sharing is
needed
• “All want data but nobody wants to share?”
• Trustworthiness?
• Purpose of use?
• Access and control?
• Justifiable use of data/needs to have access

31. Who recorded this? And why?
• The practitioner
 On behalf of the person concerned?
 To evidence practice?
 To register issues/information for others working in a care team?
 As part of a business process?
• A carer?
 Evidencing activity (eg purchasing a service)
 To share concerns or their own issues?
• The individual themselves?
 To formalise a contract?
 To inform their care team
• An Administrator?
• An auditor or regulator?
• A combination of any of the above, with shared agreement to do so?
P. Hill

32. How to share?
• With the individual’s consent
• Legally correct
• Timely
• Trustworthy
• Secure
• Under agreed circumstances that can be
followed-up
S. Koch

33. Why to share?
• E.g. scheduling and coordination of planned
activities
• Def. of triggers for information sharing such as
Initiation of patient-specific changes
Important patient-specific health events
Referrals
Delegations
Consultations
• …
S. Koch

34. Vision
Policy-driven information access/sharing
• Shaping a system of trust where the patient
is an active partner and policies are
established considering all partners/interests
• Enable flexible access to all parties involved
according to established policies

35. Actions
• Gathering knowledge about justifiable access purpose
 Supervision etc (indirect interest); benevolent family
member
 public opinion
• Linking justifiable needs to authorisation
• Make people aware of responsibilities
• Policy establishment and negotiation
• Designing what information is relevant
• Minimum basic data set for social care
• Structured documentation/tagged narrative
• Education of patients and professionals

36. ESF Exploratory Workshop:
The Challenges of Developing Social Care Informatics
as an Essential Part of Holistic Health Care
Terminology and Meaning

37. The Vision
• A shared Ontology for Social Care that
supports a range of core standards and
terminologies and enables safe and
consistent information sharing across Europe
(and beyond?)
• Supported by a Community of Practice that
shares knowledge, innovation and good
practice, enabling future learning and further
development of terms and meaning

38. Actions to take
• Review existing work on standards and use of
standards in the sector, and assess transferability of
relevant standards from associated sectors.
 Eg. Snomed, Classification of Interventions
• Map current use of classifications/terminologies used
in individual countries and identify commonalities
• Explore the use of the ICF as a potential standard for
profiling the functionality of individuals
• Compare commonly used social care tools (eg
assessment tools) to map areas of potential standard
development and create conceptual information
models to begin informing Ontology development

39. Outcome of the workshop
• Declaration by the workshop members
summarizing the key issues
• Final report (www.esf.org)

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Research
Implementation
National strategy
Example projects
Old@Home 2002-2005 (2006-2008) Sustainable Health 2011 - 2012
VIP-PA 2008 - 2010
NI Stroke 2009 - 2012
National infostructure
My Care Plan (2011 – 2014)
My Healthcare Contacts My Care Pathways 2011 - 2013

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Old@Home
2002-2008

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Problems
• Increasing elderly population
• Limited resources
• Limited access to information
– EHR
– Prescription List
– Discharge notes
– Care plan
• No support for POC
documentation
• No support for sharing
information
• Lack of participation
for patients and relatives
2011-11-25

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Old@Home - results
• Virtual Health Record (VHR)
– Immediate and ubiquitous access to patient-
oriented data
– Different views for different user groups (DN’s,
HHS, GP’s, patients & relatives)
• Mobile access
– Different technical solutions
– Support for POC documentation
• Integration
– Access to information from different feeder systems
2011-11-25

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Elderly-centric information system
Hägglund M, Chen R, Koch S. Modeling shared care plans using CONTsys and openEHR to
support shared home care of elderly. J Am Med Inform Assoc. 2011;18(1):66-9
Sabine Koch, 2011-11-24

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Context dependent system
Personalised access and group-specific views
Knows
patient
Doesn’t
know
patient
VHR
Scandurra I, Hägglund M, Koch S.
Knows Visualisation and interaction
patient design solutions to address
specific demands in shared home
care. Stud Health Tech Inf 124,
2006,:71-76
ResultsOLD@HOME

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Old@Home
http://www.medsci.uu.se/mie/projects/closecare
District nurse at a patient’s home
Gets online information!
Home helper in action
Reads, writes and communicates!
Patient in his home
Participates and feels safe!
General practitioner
Reads up to date information!
Relative
Participates and is updated!
Hägglund M, Scandurra I, Moström D, Koch S. Bridging the Gap – a Virtual Health
Record for Integrated Home Care, International Journal of Integrated Care Vol. 7, 2007
Sabine Koch, 2011-11-24

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My Care Pathways
Nina Lundberg, SLL

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Aim
• Visualising care pathways for citizens
– Stroke - Stockholm
– Lung cancer - Stockholm
– Hip operations – Malmö/Lund
– Heart diseases - Gothenborg
• Methods and guidelines how to develop other pathways
– Co-production of services with care providers, industry, patients,
research and branch organisations
• Stimulate development of other kinds of e-services
– Provide pre-requisites for service development outside the public
sector
Nina Lundberg, SLL

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Nina Lundberg, SLL

50. Foto: Fröken Fokus
Nina Lundberg, SLL

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New development
Follow care pathways Open platform for
information exchange
My health
Search engine
Methods and
guidelines Integration
User interface Security and
terminology
My Care Pathways
Follow e-Referral
Waiting lists
Existing
Journalsystem
EHR
Treatment
information
Engagement index
Exteral healthcare information
My healthcare contacts
Nina Lundberg, SLL

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Nina Lundberg, SLL

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CBMS2012
Special track on
Informatics Challenges of Patient Centric Health
and Social Care
The 25th International Symposium on Computer-Based Medical Systems
(CBMS 2012) will be held at the Università Campus Bio-Medico di Roma,
Rome, Italy, on 20-22 June 2012
Deadline paper submission: January 15, 2012
ki.se/hic/cbms2012

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Contact
Sabine Koch, Professor
Director
Health Informatics Centre
Karolinska Institutet, Stockholm
sabine.koch@ki.se
www.ki.se/hic