Healthcare Knowledge Modelling Projects for Multilevel-Based      Information Systems Dra. Luciana Tricai Cavalini, MD, MS...
Healthcare Scenario for the 21st Century (1) •Human population is ageing •In 2035, we will have a 3-fold higher demand to ...
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                          ▫ Preve...
In Brazil:  Federal Constitution, 1988, Title VIII (On the Social Order),  Chapter II (On Social Welfare), Section II (On ...
But the medicine we study in College doesn’t teach ushow to treat that:    “It is therefore understandable that a consider...
Paperrecords can’thandle it
Hardware is not the problem anymore...
...or is it?
No, it is not!
Patient
“International Standard paper sizesshould be used”
“Attention is drawn to thepotentialities of the newmethods of mechanicalsystems and data processing”
45 years later...
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                    ...
What about software?
Healthcare is an industry likeevery other – right?
Windscale (UK), 1957•Fire in reactor #1 resulted inradiation discharge.•Improper fire-fighting caused2nd discharge.•32 dea...
Flixborough (UK), 1974•Explosion at chemical plantfollowing pipe rupture(maintenance error)•28 killed, 36 injured•Rupture ...
What about healthcare?•1 in 16 hospital admissions are theresult of an adverse drug reaction• 76% are avoidable.•Annual co...
“It is unethical to carry on doingwhat we are currently doing”Professor Sir Muir GrayNHS 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 ...
Healthcare IT Projects Fail a Lot (2)• Only 35% of the projects are concluded on time, within the  budget, and attending t...
Brazilian Healthcare CardInvestment:•Federal Budget (until 2009) = R$327 million•Unesco = R$74,3 million•Total (until 2009...
“A Unique Health Identifier alone wont prevent duplicatecreation. Make sure your strategy includes a focus ondata quality ...
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 computariz...
*Interoperability*   - Cough   -For 3 months   -Low fever   -A: TB? Ca?                                    -Chest X-ray   ...
*Interoperability*   - Cough   -For 3 months   -Low fever                    - Cough                                      ...
Interoperability? - Cough -For 3 months -Low fever -A: TB? Ca?  Garage Software                                          -...
e   s             x          ICD                             t yp                                        T                ...
Why? (2)• Who will analyze the records will have to spend extra time and  money putting the semantic context back in the d...
More questions than answers• Quick search on LILACS: ▫   Keywords: “qualidade sistema informação” ▫   271 papers ▫   30 fi...
And some answers raise even morequestions“The high proportion of Caesarean deliveries among the  unissued Authorizations o...
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    sys...
ISO Standard 20514“Electronic health record — Definition, scope and context”•        Pre-requisites for na Electronic Heal...
Multilevel Modelling
Then two new questions emerge... “Shall we start everything from scratch?”                            “Who sells that?”
Standards and Specifications forHealthcare Information Systems Name      Definition        Implemented   Free and Open ISO...
The MLHIM and openEHR Specifications• Multilevel (or dual) Modelling: software development and  knowledge modelling are se...
MLHIM and openEHR Models                      Your application (EHR, CPOE etc)MLHIM and openEHR                           ...
FLOSS Available Tools (1)• Implementations of the Reference Model:  ▫ 2 Java Implementations by the openEHR Foundation  ▫ ...
http://www.openehr.org
https://launchpad.net/mlhim
https://launchpad.net/oship
http://www.mlhim.orghttp://www.oship.org
FLOSS Available Tools (2)• Archetype Editors (in ADL):  ▫ Ocean Archetype Editor (Windows-only)  ▫ LinkEHR (source code by...
https://launchpad.net/cdd
FLOSS Available Tools (3)• Archetype Repository:  ▫ None (openEHR Foundation’s CKM is proprietary)• The Healthcare Knowled...
https://launchpad.net/hkcr
FLOSS Available Tools (4)• Terminology and Vocabulary Servers:  ▫ LexGrid (http://www.lexgrid.org)  ▫ LexBIG (http://previ...
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...
Knowledge Modelling(2)• Our governance model proposes :  ▫ Preference for the use of validated instruments (including thei...
My Conclusions• I think that the path for the development of citizen-centered, longitudinal,  semantic coherent healthcare...
Special Thanks to:                                  Tim Cook                               Mike BainbridgeThank you!      ...
Presentation IWEEE 2010
Presentation IWEEE 2010
Presentation IWEEE 2010
Presentation IWEEE 2010
Presentation IWEEE 2010
Presentation IWEEE 2010
Presentation IWEEE 2010
Presentation IWEEE 2010
Presentation IWEEE 2010
Presentation IWEEE 2010
Presentation IWEEE 2010
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Presentation IWEEE 2010

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Dr. Luciana Cavalini's presentation at the International Workshop on e-Health in Emerging Economies - IWEEE - in 2010.
See: http://www.mlhim.org http://gplus.to/MLHIM and http://gplus.to/MLHIMComm for more information about semantic interoperability in healthcare.

#mlhim #semantic_interoperability #health_informatics

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Presentation IWEEE 2010

  1. 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. 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. 3. Healthcare Scenario for the 21st Century (2)
  4. 4. Healthcare Scenario for the 21st Century (3)
  5. 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. 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. 7. But the medicine we study in College doesn’t teach ushow to treat that: “It is therefore understandable that a considerable proportion of attendances atoutpatient clinics of public urban population - I really believe that all of thecontemporary world - sometimes estimated at around 80%, is motivated bycomplaints related to what might be described as a syndrome isolation andpoverty. I emphasize the word poverty to highlight its importance in the presentmoment of globalized capitalist society, with the serious and long-lastingconsequences it has on the health conditions of the working classes on the planet.I want to emphasize that socioeconomic status comes to overdeterminate theisolation already provided by the individualistic culture, worsening the situation ofexclusion and loss of life horizon of these classes. I also emphasize that thepsychological and cultural poverty where they live comes to add to the materialpoverty, with its increasing chain of everyday deprivations, humiliation andviolence” (Luz, 2005)
  8. 8. Paperrecords can’thandle it
  9. 9. Hardware is not the problem anymore...
  10. 10. ...or is it?
  11. 11. No, it is not!
  12. 12. Patient
  13. 13. “International Standard paper sizesshould be used”
  14. 14. “Attention is drawn to thepotentialities of the newmethods of mechanicalsystems and data processing”
  15. 15. 45 years later...
  16. 16. This is not na IT policy issue...
  17. 17. This is not a government policy issue...
  18. 18. This is not a State policy issue...
  19. 19. ...this is the re-foudation of the healthcare system.
  20. 20. 100% Changing Focus Self and household care Health Family Health promotion  Program  EM S/ SA Self-management Outpatient MU of chronic conditions care   Intermediate CareQuality 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$10.000 Daily investment
  21. 21. What about software?
  22. 22. Healthcare is an industry likeevery other – right?
  23. 23. Windscale (UK), 1957•Fire in reactor #1 resulted inradiation discharge.•Improper fire-fighting caused2nd discharge.•32 deaths, 260 cancer casesfrom radiation.•Poor plant design &procedures prompted safetycase regime for nuclearindustry.
  24. 24. Flixborough (UK), 1974•Explosion at chemical plantfollowing pipe rupture(maintenance error)•28 killed, 36 injured•Rupture attributed to nearbyfire•Incident prompted safety caseregime for chemical industry
  25. 25. What about healthcare?•1 in 16 hospital admissions are theresult of an adverse drug reaction• 76% are avoidable.•Annual cost = US$ 744 million, beingUS$ 565 million avoidable by putting inplace 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
  26. 26. “It is unethical to carry on doingwhat we are currently doing”Professor Sir Muir GrayNHS Chief Knowledge Officer
  27. 27. 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 promisedKaplan B, Harris-Salamone KD. Health IT success and failure: recommendations from literatureand an AMIA Workshop. J Am Med Inform Assoc 2009; 16(3): 291–299.
  28. 28. 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 2/3Rubinstein D. Standish Group Report: Theres Less Development CHAOS Today. SDTimes,2007. http://www.sdtimes.com/content/article.aspx?ArticleID-30247 2007
  29. 29. Brazilian Healthcare CardInvestment:•Federal Budget (until 2009) = R$327 million•Unesco = R$74,3 million•Total (until 2009) = R$401 millionEquivalent the the Aeolian Park in Bahia:•90MW (it illuminates a 400,000 inhab city)•Annual profit estimated in R$41 million
  30. 30. “A Unique Health Identifier alone wont prevent duplicatecreation. Make sure your strategy includes a focus ondata quality and data governance, too.” Alex Paris, “Why a Unique Health Identifier Falls Short”
  31. 31. Then two questions emerge... “So, why bother?” “But why?”
  32. 32. 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
  33. 33. *Interoperability* - Cough -For 3 months -Low fever -A: TB? Ca? -Chest X-ray -Nodule in-Bronchoalveolar Right apexlavage:-Bronchogeniccarcinoma
  34. 34. *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
  35. 35. Interoperability? - Cough -For 3 months -Low fever -A: TB? Ca? Garage Software -Chest X-ray -Nodule in Right apex-Bronchoalveolarlavage: HL7v2 Messages-BronchogeniccarcinomaCEN 13606 Extracts
  36. 36. 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 esIHE 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
  37. 37. 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
  38. 38. 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
  39. 39. And some answers raise even morequestions“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.
  40. 40. Where is the Context?
  41. 41. Here is the Context!
  42. 42. Traditional Modelling
  43. 43. 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.
  44. 44. 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.
  45. 45. Multilevel Modelling
  46. 46. Then two new questions emerge... “Shall we start everything from scratch?” “Who sells that?”
  47. 47. Standards and Specifications forHealthcare 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”
  48. 48. 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)
  49. 49. MLHIM and openEHR Models Your application (EHR, CPOE etc)MLHIM and openEHR Knowledge Modelling specifications (CCDs or Archetypes)* Reference Model
  50. 50. 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++
  51. 51. http://www.openehr.org
  52. 52. https://launchpad.net/mlhim
  53. 53. https://launchpad.net/oship
  54. 54. http://www.mlhim.orghttp://www.oship.org
  55. 55. 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
  56. 56. https://launchpad.net/cdd
  57. 57. 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)
  58. 58. https://launchpad.net/hkcr
  59. 59. 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)
  60. 60. http://www.lexgrid.org
  61. 61. http://preview.tinyurl.com/29ybeuf
  62. 62. http://www.nlm.nih.gov/research/umls
  63. 63. 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
  64. 64. 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
  65. 65. 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!
  66. 66. Special Thanks to: Tim Cook Mike BainbridgeThank you! Sergio Freirelutricav@vm.uff.brJoin us:http://www.mlhim.orghttps://launchpad.net/mlhim
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