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
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”?
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)
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$10.000
Daily investment
30. Windscale (UK), 1957
•Fire in reactor #1 resulted in
radiation discharge.
•Improper fire-fighting caused
2nd discharge.
•32 deaths, 260 cancer cases
from radiation.
•Poor plant design &
procedures prompted safety
case regime for nuclear
industry.
31. Flixborough (UK), 1974
•Explosion at chemical plant
following pipe rupture
(maintenance error)
•28 killed, 36 injured
•Rupture attributed to nearby
fire
•Incident prompted safety case
regime for chemical industry
32. What about healthcare?
•1 in 16 hospital admissions are the
result of an adverse drug reaction
• 76% are avoidable.
•Annual cost = US$ 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”
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
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.
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
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