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Healthcare Knowledge Modelling
 Projects for Multilevel-Based
      Information Systems


 Dra. Luciana Tricai Cavalini, MD, MSc, PhD
 “Multilevel Healthcare Information Modeling”
 Laboratory – Associated to INCT-MACC
 UFF/UERJ
Healthcare Scenario for the 21st Century (1)

 •Human population is ageing
 •In 2035, we will have a 3-fold
 higher demand to the healthcare
 services than today
 •Keeping the current costs, that
 means a 3-fold higher investment
 per year
 •Populacion ageing reached the
 “highlander” generation
 •What will happen when it
 reaches the X, Y, Z etc
 generations, which are not
 “highlanders”?
Healthcare Scenario for the 21st Century (2)
Healthcare Scenario for the 21st Century (3)
What do the citizens want?
• “How do you provide to me:      • And better still:
  ▫   Safe                          ▫ Prevent me getting ill
  ▫   Effective                     ▫ And don’t harm me in the
  ▫   Reproducible                    process”
  ▫   State-of-the-art
  ▫   21st Century medicine
  ▫   Wherever I am
  ▫   Whatever the time
  ▫   Whatever is wrong with me
In Brazil:
  Federal Constitution, 1988, Title VIII (On the Social Order),
  Chapter II (On Social Welfare), Section II (On Healthcare):
  • Art. 196 – Healthcare is everybody’s right and a duty of the State,
    being guaranteed through social and economic policies targeted to
    the risk reduction of disease and other outcomes and to the universal
    and egalitarian access to actions and services for its promotion,
    protection and recovery.
  Law n. 8.080, Sep 19th, 1990, Title I (On the General Statements):
  • Art. 2 – Healthcare is a fundamental right of the human being, and
    the State should provide the indispensable conditions for its full
    enjoyment.
But the medicine we study in College doesn’t teach us
how to treat that:
    “It is therefore understandable that a considerable proportion of attendances at
outpatient clinics of public urban population - I really believe that all of the
contemporary world - sometimes estimated at around 80%, is motivated by
complaints related to what might be described as a syndrome isolation and
poverty. I emphasize the word 'poverty' to highlight its importance in the present
moment of globalized capitalist society, with the serious and long-lasting
consequences it has on the health conditions of the working classes on the planet.
I want to emphasize that socioeconomic status comes to overdeterminate the
isolation already provided by the individualistic culture, worsening the situation of
exclusion and loss of life horizon of these classes. I also emphasize that the
psychological and cultural poverty where they live comes to add to the material
poverty, with its increasing chain of everyday deprivations, humiliation and
violence” (Luz, 2005)
Paper
records can’t
handle it
Hardware is not the problem anymore...
...or is it?
No, it is not!
Presentation IWEEE 2010
Presentation IWEEE 2010
Patient
Presentation IWEEE 2010
“International Standard paper sizes
should be used”
“Attention is drawn to the
potentialities of the new
methods of mechanical
systems and data processing”
45 years later...
Presentation IWEEE 2010
Presentation IWEEE 2010
Presentation IWEEE 2010
Presentation IWEEE 2010
This is not na IT policy issue...
This is not a government policy issue...
This is not a State policy issue...
...this is the re-foudation of the
        healthcare system.
100%
                                          Changing Focus

                   Self and household care
                         Health         Family Health
                        promotion         Program                    EM
                                                                         S/
                                                                              SA
                   Self-management           Outpatient                         MU
                  of chronic conditions         care                                
                                                Intermediate Care
Quality of life




                                               Nursing Houses
                                                                    Urgency Care
                                               “Palliative Care”
                                                                       Specialized
                                                                      outpatient care 

                                                                        General Hospital
                                                                                           
                                                                                     ICU   
0%




                  R$1                 R$10               R$100        R$1.000          R$10.000
                                          Daily investment
What about software?
Healthcare is an industry like
every other – right?
Windscale (UK), 1957
•Fire in reactor #1 resulted in
radiation discharge.
•Improper fire-fighting caused
2nd discharge.
•32 deaths, 260 cancer cases
from radiation.
•Poor plant design &
procedures prompted safety
case regime for nuclear
industry.
Flixborough (UK), 1974

•Explosion at chemical plant
following pipe rupture
(maintenance error)
•28 killed, 36 injured
•Rupture attributed to nearby
fire
•Incident prompted safety case
regime for chemical industry
What about healthcare?

•1 in 16 hospital admissions are the
result of an adverse drug reaction
• 76% are avoidable.
•Annual cost = US$ 744 million, being
US$ 565 million avoidable by putting in
place e-prescribing (?)




   Pirmohamed, M. et al: Adverse drug reactions as a cause of admission to hospital: prospective
   analysis of 18,820 patients: BMJ 2004; 329: 15-19
“It is unethical to carry on doing
what we are currently doing”
Professor Sir Muir Gray
NHS Chief Knowledge Officer
Healthcare IT Projects Fail a Lot (1)
• At least 40% of the Healthcare IT projects are abandoned
• Less than 40% of the Big Commercial Systems meet their
  targets
• Some sources report a 70% failure rate
• Other studies show that only 1 out of 8 Healthcare IT
  projects are regarded as a true success, with more than
  half overshooting budgets and timetables and still not
  delivering what was promised
Kaplan B, Harris-Salamone KD. Health IT success and failure: recommendations from literature
and an AMIA Workshop. J Am Med Inform Assoc 2009; 16(3): 291–299.
Healthcare IT Projects Fail a Lot (2)
• Only 35% of the projects are concluded on time, within the
  budget, and attending to the user’s requisites
• It was 16,2% in 1994
• About half of all projects are audited
• Budget is overshot, in average, in 50
• Timetable is overshot, in average, in 2/3


Rubinstein D. Standish Group Report: There's Less Development CHAOS Today. SDTimes,
2007. http://www.sdtimes.com/content/article.aspx?ArticleID-30247 2007
Presentation IWEEE 2010
Presentation IWEEE 2010
Brazilian Healthcare Card

Investment:
•Federal Budget (until 2009) = R$327 million
•Unesco = R$74,3 million
•Total (until 2009) = R$401 million

Equivalent the the Aeolian Park in Bahia:
•90MW (it illuminates a 400,000 inhab city)
•Annual profit estimated in R$41 million
Presentation IWEEE 2010
“A Unique Health Identifier alone won't prevent duplicate
creation. Make sure your strategy includes a focus on
data quality and data governance, too.”
                             Alex Paris, “Why a Unique Health Identifier Falls Short”
Then two questions emerge...

 “So, why bother?”


                     “But why?”
Why? (1)
• The current medical records are a chaotic mixture of old
  (paper) and new (computers) technology
• The computarized records already existing are often
  incompatible, using different applications for different types
  of data, even inside a single healthcare setting
• The information being shared through regional, national or
  global networks is further complicated by differences in the
  data persistence mechanisms
*Interoperability*



   - Cough
   -For 3 months
   -Low fever
   -A: TB? Ca?

                                    -Chest X-ray
                                    -Nodule in
-Bronchoalveolar                    Right apex
lavage:
-Bronchogenic
carcinoma
*Interoperability*



   - Cough
   -For 3 months
   -Low fever                    - Cough
                                                 -Chest X-ray
   -A: TB? Ca?                   -For 3 months
                                                 -Nodule in
                                 -Low fever
                                                 Right apex
                                 -A: TB? Ca?
- Cough
                -Chest X-ray
-For 3 months
                -Nodule in
-Low fever
                Right apex
-A: TB? Ca?
-Bronchoalveolar lavage:
-Bronchogenic carcinoma
Interoperability?



 - Cough
 -For 3 months
 -Low fever
 -A: TB? Ca?
  Garage Software
                                          -Chest X-ray
                                          -Nodule in
                                          Right apex
-Bronchoalveolar
lavage:                                  HL7v2 Messages
-Bronchogenic
carcinoma
CEN 13606 Extracts
e   s
             x
          ICD                             t yp                                        T
                                      a                                             DC
                                   at                                            OM
                                                                                   E
 WHO                              D                                            N
                                                                        IHTSDOS

                       ISO         PMAC




                                                                       EN13606
                                                                       EN1 136
      ASTM CCR         Documents
                      Content models
                      Security
                       Terminology




                                                                         EN
                                                                          360606
                       Services
                                                       EN
   AC




                                                                               -4
                                                         13




                                                                               -3-2
 RB




                                s
                                                           60
        PDQ                   ge                                6-
                                                                   1
                            sa
                            es


IHE     PIX                                 s                             CEN
                           m



       RID                              age
                                    ess
                       v2




                                  m
                             v3
 XD




                     HL7
   S




                                                                                      HI
                              HSSP




                                                                                         SA
             O   W
          CC               CD
                 s
               te




                              A
              pla
          m
         Te




                                                                         Fonte: Thomas Beale, EFMI
Why? (2)
• Who will analyze the records will have to spend extra time and
  money putting the semantic context back in the data, because the
  context is packaged in the original system, which is probably not
  the same system as the data analyst is using.
• This is the best-case scenario: only two steps away from the
  context of the point of collection of the original data.
• It is the best, because in general data are collected on paper and
  then entering data in the system is made by people with little or
  no healthcare training.
• Therefore, the original semantic context is probably written in a
  paper form within a folder, somewhere.
• There is no way to link these data with the complete picture of the
  patient, much less from one patient to another.
• This current form of data analysis raises more questions than
  answers in many cases
More questions than answers
• Quick search on LILACS:
 ▫   Keywords: “qualidade sistema informação”
 ▫   271 papers
 ▫   30 first were selected
 ▫   Only abstract was read
 ▫   13 papers reported the the quality of information
     contained in the system was a limitation of the study
And some answers raise even more
questions
“The high proportion of Caesarean deliveries among the
  unissued Authorizations of Hospital Admittance suggests
  that the enforcement of ordinances that limit the payment of
  this type of delivery leads to the intentional change in the
  procedure [field in the AHA information system].”

 Bittencourt AS et al. A qualidade da informação sobre o parto no Sistema de Informações
 Hospitalares no Município do Rio de Janeiro, Brasil, 1999 a 2001. Cad Saude Publica 2008;
 24(6): 1344-1354.
Where is the Context?
Here is the Context!
Traditional Modelling
Single-Level Modelling Issues




   Information is modelled in a way that “serves” the current needs of the healthcare
    system
   The addition of new concepts or the change of existing concepts implies in re-factoring
    the whole system (re-modelling, re-implementation, re-test, re-distribution)
   High cost, slowness in the integration of new knowledge to the systems etc.
ISO Standard 20514
“Electronic health record — Definition, scope and context”
•        Pre-requisites for na Electronic Health Record (EHR):

    a)     A standardised EHR reference model, i.e. the EHR information
           architecture, between the sender (or sharer) and receiver of the
           information,
    b)     Standardised service interface models to provide interoperability
           between the EHR service and other services such as demographics,
           terminology, access control and security services in a comprehensive
           clinical information system,
    c)     A standardised set of domain-specific concept models, i.e.
           archetypes and templates for clinical, demographic, and other domain-
           specific concepts, and
    d)     Standardised terminologies which underpin the archetypes. Note
           that this does not mean that there needs to be a single standardised
           terminology for each health domain but rather, terminologies used
           should be associated with controlled vocabularies.
Multilevel Modelling
Then two new questions emerge...

 “Shall we start everything from scratch?”


                            “Who sells that?”
Standards and Specifications for
Healthcare Information Systems
 Name      Definition        Implemented   Free and Open
 ISO/CEN   Standard          “Yes”         No
 HL7       Specification and Yes           No
           “Standard”
 openEHR   Specification and Yes           “Yes”
           “Standard”
 MLHIM     “Specification”   Yes           Yes
           and “Standard”
The MLHIM and openEHR Specifications

• Multilevel (or dual) Modelling: software development and
  knowledge modelling are separated
• The Reference Model is implemented in software
• The knowledge is modelled in Concept Constraint
  Definitions - CCDs (“archetypes” in the openEHR specs)
MLHIM and openEHR Models

                      Your application (EHR, CPOE etc)
MLHIM and openEHR




                            Knowledge Modelling
  specifications




                           (CCDs or Archetypes)*


                             Reference Model
FLOSS Available Tools (1)
• Implementations of the Reference Model:
  ▫ 2 Java Implementations by the openEHR Foundation
  ▫ 1 Grails implementation by Pablo Pazos (Uruguay)
  ▫ 1 Python Implementation by the MLHIM Laboratory
  ▫ 1 Ruby Implementation in course by a collaboration between
    a Japanese research group and the MLHIM Laboratory
  ▫ 2 other implementation projects by the MLHIm Laboratory:
       Lua
       C++
http://www.openehr.org
https://launchpad.net/mlhim
https://launchpad.net/oship
http://www.mlhim.org




http://www.oship.org
FLOSS Available Tools (2)
• Archetype Editors (in ADL):
  ▫ Ocean Archetype Editor (Windows-only)
  ▫ LinkEHR (source code by request, there are bugs)
  ▫ LiU Archetype Editor (outdated)
• Templates Editors (in OET, OPT):
  ▫ None (only the proprietary Ocean Template Designer)
• Constraint Definition Designer Project (in XML):
  ▫ Only full-FLOSS and multiplatform tool
  ▫ Combined CCD and Template editor
  ▫ Baseado on Freemind, Plone and other ideas
https://launchpad.net/cdd
FLOSS Available Tools (3)
• Archetype Repository:
  ▫ None (openEHR Foundation’s CKM is proprietary)
• The Healthcare Knowledge Component Repository Project:
  ▫ Repository of the XML Schemas of CCDs
  ▫ Based on Plone 4
  ▫ Functionalities:
      All the famous Plone’s CMS and WFM features
      XML Schema validation
      API to CDD, OSHIP and the Multilevel Authoring for
       Guidelines (MAG)
https://launchpad.net/hkcr
Presentation IWEEE 2010
FLOSS Available Tools (4)
• Terminology and Vocabulary Servers:
  ▫ LexGrid (http://www.lexgrid.org)
  ▫ LexBIG (http://preview.tinyurl.com/29ybeuf)
  ▫ Unified Medical Language System (UMLS)
    (http://www.nlm.nih.gov/research/umls)
http://www.lexgrid.org
http://preview.tinyurl.com/29ybeuf
http://www.nlm.nih.gov/research/umls
Knowledge Modelling (1)
• Our governance model proposes:
  ▫ Openness and transparency in decision making and
    operational procedures
  ▫ Deliberative systems based on universal suffrage and
    representativensess
  ▫ Cost-effective financing models, based on equitable and
    public distribution of resources, including direct funding,
    collaborative work, research and education projects etc.
  ▫ Coordinated and federation principles-based decentralization
Knowledge Modelling(2)
• Our governance model proposes :
  ▫ Preference for the use of validated instruments (including their
    translations) for the development of CCDs
  ▫ Preferential use of knowledge modelling strategies derived from
    the collaborative computing (web based or presential)
  ▫ Knowledge modelling might be based on expert panels in
    exceptional situations
  ▫ Publication of the knowledge modelling artifacts on a public, open
    access, FLOSS-based repository, maintained by the healthcare
    system manager in each one of the three levels of
    government
My Conclusions
• I think that the path for the development of citizen-centered, longitudinal,
  semantic coherent healthcare information systems is based on this tripod:
  ▫ Multilevel modelling
  ▫ Adoption of standardized terminologies
  ▫ Adoption of a Unique Citizen Identifier
• Emerging countries have some competitive advantages in healthcare IT:
  ▫   Usually, the Big Customer is just one (the government)
  ▫   We are starting almost from scratch
  ▫   Emerging countries are much more FLOSS-friendly
  ▫   All needed tools are available or being developen in FLOSS
• What’s next:
  ▫ Invite more partners to participate (government, academy, industry, third sector,
    FLOSS community)
  ▫ Go to work!
Special Thanks to:
                                  Tim Cook
                               Mike Bainbridge

Thank you!                      Sergio Freire




lutricav@vm.uff.br




Join us:

http://www.mlhim.org
https://launchpad.net/mlhim

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Presentation IWEEE 2010

  • 1. Healthcare Knowledge Modelling Projects for Multilevel-Based Information Systems Dra. Luciana Tricai Cavalini, MD, MSc, PhD “Multilevel Healthcare Information Modeling” Laboratory – Associated to INCT-MACC UFF/UERJ
  • 2. Healthcare Scenario for the 21st Century (1) •Human population is ageing •In 2035, we will have a 3-fold higher demand to the healthcare services than today •Keeping the current costs, that means a 3-fold higher investment per year •Populacion ageing reached the “highlander” generation •What will happen when it reaches the X, Y, Z etc generations, which are not “highlanders”?
  • 3. Healthcare Scenario for the 21st Century (2)
  • 4. Healthcare Scenario for the 21st Century (3)
  • 5. What do the citizens want? • “How do you provide to me: • And better still: ▫ Safe ▫ Prevent me getting ill ▫ Effective ▫ And don’t harm me in the ▫ Reproducible process” ▫ State-of-the-art ▫ 21st Century medicine ▫ Wherever I am ▫ Whatever the time ▫ Whatever is wrong with me
  • 6. In Brazil: Federal Constitution, 1988, Title VIII (On the Social Order), Chapter II (On Social Welfare), Section II (On Healthcare): • Art. 196 – Healthcare is everybody’s right and a duty of the State, being guaranteed through social and economic policies targeted to the risk reduction of disease and other outcomes and to the universal and egalitarian access to actions and services for its promotion, protection and recovery. Law n. 8.080, Sep 19th, 1990, Title I (On the General Statements): • Art. 2 – Healthcare is a fundamental right of the human being, and the State should provide the indispensable conditions for its full enjoyment.
  • 7. But the medicine we study in College doesn’t teach us how to treat that: “It is therefore understandable that a considerable proportion of attendances at outpatient clinics of public urban population - I really believe that all of the contemporary world - sometimes estimated at around 80%, is motivated by complaints related to what might be described as a syndrome isolation and poverty. I emphasize the word 'poverty' to highlight its importance in the present moment of globalized capitalist society, with the serious and long-lasting consequences it has on the health conditions of the working classes on the planet. I want to emphasize that socioeconomic status comes to overdeterminate the isolation already provided by the individualistic culture, worsening the situation of exclusion and loss of life horizon of these classes. I also emphasize that the psychological and cultural poverty where they live comes to add to the material poverty, with its increasing chain of everyday deprivations, humiliation and violence” (Luz, 2005)
  • 9. Hardware is not the problem anymore...
  • 11. No, it is not!
  • 16. “International Standard paper sizes should be used”
  • 17. “Attention is drawn to the potentialities of the new methods of mechanical systems and data processing”
  • 23. This is not na IT policy issue...
  • 24. This is not a government policy issue...
  • 25. This is not a State policy issue...
  • 26. ...this is the re-foudation of the healthcare system.
  • 27. 100% Changing Focus Self and household care Health Family Health promotion  Program  EM S/ SA Self-management Outpatient MU of chronic conditions care   Intermediate Care Quality of life Nursing Houses Urgency Care “Palliative Care” Specialized outpatient care  General Hospital  ICU  0% R$1 R$10 R$100 R$1.000 R$10.000 Daily investment
  • 29. Healthcare is an industry like every other – right?
  • 30. Windscale (UK), 1957 •Fire in reactor #1 resulted in radiation discharge. •Improper fire-fighting caused 2nd discharge. •32 deaths, 260 cancer cases from radiation. •Poor plant design & procedures prompted safety case regime for nuclear industry.
  • 31. Flixborough (UK), 1974 •Explosion at chemical plant following pipe rupture (maintenance error) •28 killed, 36 injured •Rupture attributed to nearby fire •Incident prompted safety case regime for chemical industry
  • 32. What about healthcare? •1 in 16 hospital admissions are the result of an adverse drug reaction • 76% are avoidable. •Annual cost = US$ 744 million, being US$ 565 million avoidable by putting in place e-prescribing (?) Pirmohamed, M. et al: Adverse drug reactions as a cause of admission to hospital: prospective analysis of 18,820 patients: BMJ 2004; 329: 15-19
  • 33. “It is unethical to carry on doing what we are currently doing” Professor Sir Muir Gray NHS Chief Knowledge Officer
  • 34. Healthcare IT Projects Fail a Lot (1) • At least 40% of the Healthcare IT projects are abandoned • Less than 40% of the Big Commercial Systems meet their targets • Some sources report a 70% failure rate • Other studies show that only 1 out of 8 Healthcare IT projects are regarded as a true success, with more than half overshooting budgets and timetables and still not delivering what was promised Kaplan B, Harris-Salamone KD. Health IT success and failure: recommendations from literature and an AMIA Workshop. J Am Med Inform Assoc 2009; 16(3): 291–299.
  • 35. Healthcare IT Projects Fail a Lot (2) • Only 35% of the projects are concluded on time, within the budget, and attending to the user’s requisites • It was 16,2% in 1994 • About half of all projects are audited • Budget is overshot, in average, in 50 • Timetable is overshot, in average, in 2/3 Rubinstein D. Standish Group Report: There's Less Development CHAOS Today. SDTimes, 2007. http://www.sdtimes.com/content/article.aspx?ArticleID-30247 2007
  • 38. Brazilian Healthcare Card Investment: •Federal Budget (until 2009) = R$327 million •Unesco = R$74,3 million •Total (until 2009) = R$401 million Equivalent the the Aeolian Park in Bahia: •90MW (it illuminates a 400,000 inhab city) •Annual profit estimated in R$41 million
  • 40. “A Unique Health Identifier alone won't prevent duplicate creation. Make sure your strategy includes a focus on data quality and data governance, too.” Alex Paris, “Why a Unique Health Identifier Falls Short”
  • 41. Then two questions emerge... “So, why bother?” “But why?”
  • 42. Why? (1) • The current medical records are a chaotic mixture of old (paper) and new (computers) technology • The computarized records already existing are often incompatible, using different applications for different types of data, even inside a single healthcare setting • The information being shared through regional, national or global networks is further complicated by differences in the data persistence mechanisms
  • 43. *Interoperability* - Cough -For 3 months -Low fever -A: TB? Ca? -Chest X-ray -Nodule in -Bronchoalveolar Right apex lavage: -Bronchogenic carcinoma
  • 44. *Interoperability* - Cough -For 3 months -Low fever - Cough -Chest X-ray -A: TB? Ca? -For 3 months -Nodule in -Low fever Right apex -A: TB? Ca? - Cough -Chest X-ray -For 3 months -Nodule in -Low fever Right apex -A: TB? Ca? -Bronchoalveolar lavage: -Bronchogenic carcinoma
  • 45. Interoperability? - Cough -For 3 months -Low fever -A: TB? Ca? Garage Software -Chest X-ray -Nodule in Right apex -Bronchoalveolar lavage: HL7v2 Messages -Bronchogenic carcinoma CEN 13606 Extracts
  • 46. e s x ICD t yp T a DC at OM E WHO D N IHTSDOS ISO PMAC EN13606 EN1 136 ASTM CCR Documents Content models Security Terminology EN 360606 Services EN AC -4 13 -3-2 RB s 60 PDQ ge 6- 1 sa es IHE PIX s CEN m RID age ess v2 m v3 XD HL7 S HI HSSP SA O W CC CD s te A pla m Te Fonte: Thomas Beale, EFMI
  • 47. Why? (2) • Who will analyze the records will have to spend extra time and money putting the semantic context back in the data, because the context is packaged in the original system, which is probably not the same system as the data analyst is using. • This is the best-case scenario: only two steps away from the context of the point of collection of the original data. • It is the best, because in general data are collected on paper and then entering data in the system is made by people with little or no healthcare training. • Therefore, the original semantic context is probably written in a paper form within a folder, somewhere. • There is no way to link these data with the complete picture of the patient, much less from one patient to another. • This current form of data analysis raises more questions than answers in many cases
  • 48. More questions than answers • Quick search on LILACS: ▫ Keywords: “qualidade sistema informação” ▫ 271 papers ▫ 30 first were selected ▫ Only abstract was read ▫ 13 papers reported the the quality of information contained in the system was a limitation of the study
  • 49. And some answers raise even more questions “The high proportion of Caesarean deliveries among the unissued Authorizations of Hospital Admittance suggests that the enforcement of ordinances that limit the payment of this type of delivery leads to the intentional change in the procedure [field in the AHA information system].” Bittencourt AS et al. A qualidade da informação sobre o parto no Sistema de Informações Hospitalares no Município do Rio de Janeiro, Brasil, 1999 a 2001. Cad Saude Publica 2008; 24(6): 1344-1354.
  • 50. Where is the Context?
  • 51. Here is the Context!
  • 53. Single-Level Modelling Issues  Information is modelled in a way that “serves” the current needs of the healthcare system  The addition of new concepts or the change of existing concepts implies in re-factoring the whole system (re-modelling, re-implementation, re-test, re-distribution)  High cost, slowness in the integration of new knowledge to the systems etc.
  • 54. ISO Standard 20514 “Electronic health record — Definition, scope and context” • Pre-requisites for na Electronic Health Record (EHR): a) A standardised EHR reference model, i.e. the EHR information architecture, between the sender (or sharer) and receiver of the information, b) Standardised service interface models to provide interoperability between the EHR service and other services such as demographics, terminology, access control and security services in a comprehensive clinical information system, c) A standardised set of domain-specific concept models, i.e. archetypes and templates for clinical, demographic, and other domain- specific concepts, and d) Standardised terminologies which underpin the archetypes. Note that this does not mean that there needs to be a single standardised terminology for each health domain but rather, terminologies used should be associated with controlled vocabularies.
  • 56. Then two new questions emerge... “Shall we start everything from scratch?” “Who sells that?”
  • 57. Standards and Specifications for Healthcare Information Systems Name Definition Implemented Free and Open ISO/CEN Standard “Yes” No HL7 Specification and Yes No “Standard” openEHR Specification and Yes “Yes” “Standard” MLHIM “Specification” Yes Yes and “Standard”
  • 58. The MLHIM and openEHR Specifications • Multilevel (or dual) Modelling: software development and knowledge modelling are separated • The Reference Model is implemented in software • The knowledge is modelled in Concept Constraint Definitions - CCDs (“archetypes” in the openEHR specs)
  • 59. MLHIM and openEHR Models Your application (EHR, CPOE etc) MLHIM and openEHR Knowledge Modelling specifications (CCDs or Archetypes)* Reference Model
  • 60. FLOSS Available Tools (1) • Implementations of the Reference Model: ▫ 2 Java Implementations by the openEHR Foundation ▫ 1 Grails implementation by Pablo Pazos (Uruguay) ▫ 1 Python Implementation by the MLHIM Laboratory ▫ 1 Ruby Implementation in course by a collaboration between a Japanese research group and the MLHIM Laboratory ▫ 2 other implementation projects by the MLHIm Laboratory:  Lua  C++
  • 65. FLOSS Available Tools (2) • Archetype Editors (in ADL): ▫ Ocean Archetype Editor (Windows-only) ▫ LinkEHR (source code by request, there are bugs) ▫ LiU Archetype Editor (outdated) • Templates Editors (in OET, OPT): ▫ None (only the proprietary Ocean Template Designer) • Constraint Definition Designer Project (in XML): ▫ Only full-FLOSS and multiplatform tool ▫ Combined CCD and Template editor ▫ Baseado on Freemind, Plone and other ideas
  • 67. FLOSS Available Tools (3) • Archetype Repository: ▫ None (openEHR Foundation’s CKM is proprietary) • The Healthcare Knowledge Component Repository Project: ▫ Repository of the XML Schemas of CCDs ▫ Based on Plone 4 ▫ Functionalities:  All the famous Plone’s CMS and WFM features  XML Schema validation  API to CDD, OSHIP and the Multilevel Authoring for Guidelines (MAG)
  • 70. FLOSS Available Tools (4) • Terminology and Vocabulary Servers: ▫ LexGrid (http://www.lexgrid.org) ▫ LexBIG (http://preview.tinyurl.com/29ybeuf) ▫ Unified Medical Language System (UMLS) (http://www.nlm.nih.gov/research/umls)
  • 74. Knowledge Modelling (1) • Our governance model proposes: ▫ Openness and transparency in decision making and operational procedures ▫ Deliberative systems based on universal suffrage and representativensess ▫ Cost-effective financing models, based on equitable and public distribution of resources, including direct funding, collaborative work, research and education projects etc. ▫ Coordinated and federation principles-based decentralization
  • 75. Knowledge Modelling(2) • Our governance model proposes : ▫ Preference for the use of validated instruments (including their translations) for the development of CCDs ▫ Preferential use of knowledge modelling strategies derived from the collaborative computing (web based or presential) ▫ Knowledge modelling might be based on expert panels in exceptional situations ▫ Publication of the knowledge modelling artifacts on a public, open access, FLOSS-based repository, maintained by the healthcare system manager in each one of the three levels of government
  • 76. My Conclusions • I think that the path for the development of citizen-centered, longitudinal, semantic coherent healthcare information systems is based on this tripod: ▫ Multilevel modelling ▫ Adoption of standardized terminologies ▫ Adoption of a Unique Citizen Identifier • Emerging countries have some competitive advantages in healthcare IT: ▫ Usually, the Big Customer is just one (the government) ▫ We are starting almost from scratch ▫ Emerging countries are much more FLOSS-friendly ▫ All needed tools are available or being developen in FLOSS • What’s next: ▫ Invite more partners to participate (government, academy, industry, third sector, FLOSS community) ▫ Go to work!
  • 77. Special Thanks to: Tim Cook Mike Bainbridge Thank you! Sergio Freire lutricav@vm.uff.br Join us: http://www.mlhim.org https://launchpad.net/mlhim