Foto: Fröken FokusHealth Informatics Centrea collaboration between Stockholm County Council and KI        Integration betw...
Foto: Fröken Fokus                          Agenda• Swedish health and social care and the  National eHealth strategy• Wha...
Foto: Fröken Fokus Swedish Health and social care• 9 million inhabitants• 21 self-governed regions/county councils with  r...
Foto: Fröken Fokus           Hospital and primary careSabine Koch, 2011-11-24
Foto: Fröken Fokus             IT costs as part of turnover                   2004-2010 (%)Source: Jervall L, Pehrsson T. ...
Foto: Fröken FokusChanges in county council costs  for IT (in SEK) 2009-2010• Communication                               ...
Foto: Fröken Fokus                                              National IT Strategy                                      ...
Foto: Fröken Fokus                 IT – an integrated part of                    Swedish healthcare                       ...
Foto: Fröken Fokus                          WHY?• Clinical champions supported by strong  administrators• Collegial pressu...
Foto: Fröken Fokus     Trend towards one single EHR                system                                                 ...
Foto: Fröken FokusIT an integrated part of Swedish           healthcare• e-Prescriptions      – 80 % of all pharmaceutical...
Foto: Fröken FokusIT an integrated part of Swedish           healthcare• National Quality Registries     •    60+ national...
Foto: Fröken FokusNational eHealth Strategy 2010
Foto: Fröken Fokus                            Status 2010National level                               Regional level      ...
Foto: Fröken Fokus                                    Integrated EHRSource: Jervall L, Pehrsson T. IT-stöd i landstingen (...
Foto: Fröken Fokus Strategic plan for municipalities            2011-2012Catharina Mann, SKL
Foto: Fröken Fokus   Size of Swedish municipalitiesCatharina Mann, SKL
Foto: Fröken Fokus                        NationalNational                Information-terminology             structureKir...
Foto: Fröken Fokus        What renders integration of         health and social care                specific?Sabine Koch, ...
ESF Exploratory Workshop:             The Challenges of Developing Social Care Informatics             as an Essential Par...
The idea• Ageing population in Europe• Consumer awareness and increasing  expectations• Electronic record systems in socia...
M. Rigby
What is Social Care?•   Social work is a profession and a social science committed to the pursuit of social    justice, to...
ESF Exploratory Workshop:The Challenges of Developing Social Care Informaticsas an Essential Part of Holistic Health Care ...
ESF Exploratory Workshop:The Challenges of Developing Social Care Informaticsas an Essential Part of Holistic Health Care ...
M. Rigby
Management• Social care is both organisationally and  legally managed seperately from health care  Even in countries wher...
ESF Exploratory Workshop:The Challenges of Developing Social Care Informaticsas an Essential Part of Holistic Health Care ...
Comparison• Health care record       • Social care record   Medical                    Social   Narrow                 ...
Who wants to share records?• If collaboration is wanted, record sharing is  needed• “All want data but nobody wants to sha...
Who recorded this? And why?• The practitioner       On behalf of the person concerned?       To evidence practice?     ...
How to share?•   With the individual’s consent•   Legally correct•   Timely•   Trustworthy•   Secure•   Under agreed circu...
Why to share?• E.g. scheduling and coordination of planned  activities• Def. of triggers for information sharing such as  ...
VisionPolicy-driven information access/sharing• Shaping a system of trust where the patient  is an active partner and poli...
Actions• Gathering knowledge about justifiable access purpose     Supervision etc (indirect interest); benevolent family ...
ESF Exploratory Workshop:   The Challenges of Developing Social Care Informatics   as an Essential Part of Holistic Health...
The Vision• A shared Ontology for Social Care that  supports a range of core standards and  terminologies and enables safe...
Actions to take• Review existing work on standards and use of  standards in the sector, and assess transferability of  rel...
Outcome of the workshop• Declaration by the workshop members  summarizing the key issues• Final report (www.esf.org)
Foto: Fröken FokusResearchImplementationNational strategy                  Example projectsOld@Home 2002-2005 (2006-2008) ...
Foto: Fröken FokusOld@Home2002-2008
Foto: Fröken Fokus                         Problems• Increasing elderly population• Limited resources• Limited access to i...
Foto: Fröken Fokus             Old@Home - results•    Virtual Health Record (VHR)    – Immediate and ubiquitous access to ...
Foto: Fröken Fokus             Elderly-centric information system                          Hägglund M, Chen R, Koch S. Mod...
Foto: Fröken Fokus           Context dependent system            Personalised access and group-specific views Knows patien...
Foto: Fröken Fokus                                        Old@Home                              http://www.medsci.uu.se/mi...
Foto: Fröken Fokus                     My Care PathwaysNina Lundberg, SLL
Foto: Fröken Fokus                                Aim• Visualising care pathways for citizens      –   Stroke - Stockholm ...
Foto: Fröken FokusNina Lundberg, SLL
Foto: Fröken FokusNina Lundberg, SLL
Foto: Fröken Fokus     New development                        Follow care pathways                        Open platform fo...
Foto: Fröken Fokus
Foto: Fröken FokusNina Lundberg, SLL
Foto: Fröken Fokus                        CBMS2012Special track onInformatics Challenges of Patient Centric Healthand Soci...
Foto: Fröken Fokus                 ContactSabine Koch, ProfessorDirectorHealth Informatics CentreKarolinska Institutet, St...
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Integration Between Health and Social Care; the Pivotal Role of Primary Care and IT

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

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Integration Between Health and Social Care; the Pivotal Role of Primary Care and IT

  1. 1. Foto: Fröken FokusHealth Informatics Centrea 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 DirectorHealth Informatics Centre, Dept. of LIME and Dept. of Medicine (MedSolna), KI
  2. 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 projectsSabine Koch, 2011-11-24
  3. 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 ParliamentSabine Koch, 2011-11-24
  4. 4. Foto: Fröken Fokus Hospital and primary careSabine Koch, 2011-11-24
  5. 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
  6. 6. Foto: Fröken FokusChanges 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
  7. 7. Foto: Fröken Fokus 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
  8. 8. Foto: Fröken Fokus 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
  9. 9. Foto: Fröken Fokus 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-centricitySabine Koch, 2011-11-24
  10. 10. Foto: Fröken Fokus 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 marketSource: Jervall L, Pehrsson T. IT-stöd i landstingen (IT support in County Councils), Sveriges Kommuner och Landsting (SALAR), 2011
  11. 11. Foto: Fröken FokusIT 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
  12. 12. Foto: Fröken FokusIT 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 lackingSabine Koch, 2011-11-24
  13. 13. Foto: Fröken FokusNational eHealth Strategy 2010
  14. 14. Foto: Fröken Fokus Status 2010National level Regional level • County councils/regions integrateStrategic 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 individualSabine Koch, 2011-11-24
  15. 15. Foto: Fröken Fokus Integrated EHRSource: Jervall L, Pehrsson T. IT-stöd i landstingen (IT support in County Councils), Sveriges Kommuner och Landsting (SALAR), 2011
  16. 16. Foto: Fröken Fokus Strategic plan for municipalities 2011-2012Catharina Mann, SKL
  17. 17. Foto: Fröken Fokus Size of Swedish municipalitiesCatharina Mann, SKL
  18. 18. Foto: Fröken Fokus NationalNational Information-terminology structureKirsti Dahlman, CeHiS
  19. 19. Foto: Fröken Fokus What renders integration of health and social care specific?Sabine Koch, 2011-11-24
  20. 20. ESF Exploratory Workshop: The Challenges of Developing Social Care Informatics as an Essential Part of Holistic Health CareESF Exploratory WorkshopsEach year, ESF supports approximately 50 Exploratory Workshops across all scientificdomains.These small, interactive group sessions are aimed at opening up new directions inresearch 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 acrossEurope and involve mature scientists as well as young, independent researchers andscholars with leadership potential. The relatively small scale (in terms of peopleinvolved) provides an ideal platform for focus on the topic and for all participants tocontribute to discussions and plan follow-up collaborative work. Interdisciplinarytopics are greatly encouraged.http://www.esf.org/activities/exploratory-workshops.html
  21. 21. The idea• Ageing population in Europe• Consumer awareness and increasing expectations• Electronic record systems in social care are emergingBUT• New research issues arise that need to be identified and explored and that currently have no discussion forum
  22. 22. M. Rigby
  23. 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. 24. ESF Exploratory Workshop:The Challenges of Developing Social Care Informaticsas an Essential Part of Holistic Health Care Key issues -Management -Record sharing-Terminology and meaning
  25. 25. ESF Exploratory Workshop:The Challenges of Developing Social Care Informaticsas an Essential Part of Holistic Health Care Management
  26. 26. M. Rigby
  27. 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. 28. ESF Exploratory Workshop:The Challenges of Developing Social Care Informaticsas an Essential Part of Holistic Health Care Record sharing
  29. 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. 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. 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. 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. 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. 34. VisionPolicy-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. 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. 36. ESF Exploratory Workshop: The Challenges of Developing Social Care Informatics as an Essential Part of Holistic Health CareTerminology and Meaning
  37. 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. 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. 39. Outcome of the workshop• Declaration by the workshop members summarizing the key issues• Final report (www.esf.org)
  40. 40. Foto: Fröken FokusResearchImplementationNational strategy Example projectsOld@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
  41. 41. Foto: Fröken FokusOld@Home2002-2008
  42. 42. Foto: Fröken Fokus 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
  43. 43. Foto: Fröken Fokus 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 systems2011-11-25
  44. 44. Foto: Fröken Fokus 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):66-9Sabine Koch, 2011-11-24
  45. 45. Foto: Fröken Fokus 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,:71-76ResultsOLD@HOME
  46. 46. Foto: Fröken Fokus Old@Home http://www.medsci.uu.se/mie/projects/closecare District nurse at a patient’s home Gets online information! Home helper in actionReads, 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
  47. 47. Foto: Fröken Fokus My Care PathwaysNina Lundberg, SLL
  48. 48. Foto: Fröken Fokus 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 sectorNina Lundberg, SLL
  49. 49. Foto: Fröken FokusNina Lundberg, SLL
  50. 50. Foto: Fröken FokusNina Lundberg, SLL
  51. 51. Foto: Fröken Fokus 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 listsExisting Journalsystem EHR Treatment information Engagement index Exteral healthcare information My healthcare contacts Nina Lundberg, SLL
  52. 52. Foto: Fröken Fokus
  53. 53. Foto: Fröken FokusNina Lundberg, SLL
  54. 54. Foto: Fröken Fokus CBMS2012Special track onInformatics Challenges of Patient Centric Healthand Social CareThe 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
  55. 55. Foto: Fröken Fokus ContactSabine Koch, ProfessorDirectorHealth Informatics CentreKarolinska Institutet, Stockholmsabine.koch@ki.sewww.ki.se/hic

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