Desafios da Informao Mdica

Healthcare Knowledge Modelling Projects for Multilevel-Based Information SystemsDra. Luciana Tricai Cavalini, MD, MSc, PhDMultilevel Healthcare Information ModelingLaboratory Associated to INCT-MACCUFF/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?

And better still:

Prevent me getting ill

And dont harm me in the process

How do you provide to me:

Safe

Effective

Reproducible

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 everybodys 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 doesnt 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 cant handle it

Hardware is not the problem anymore...

...or is it?

No, it is not!

Patient

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...

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.

Changing Focus

Specialized outpatient careGeneral HospitalICUSelf and household careHealth promotionSelf-management of chronic conditionsFamily Health ProgramOutpatient care

Intermediate CareNursing HousesPalliative CareUrgency Care

Quality of life0%100%Daily investmentR$1R$10R$100R$1.000R$10.000EMS/SAMU

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), 1974Explosion 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 doingProfessor 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): 291299.

Healthcare IT Projects Fail a Lot (2)

Only 35% of the projects are concluded on time, within the budget, and attending to the users 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

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

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

- CoughFor 3 months

Low fever

A: TB? Ca?

Chest X-ray

Nodule in Right apex

Bronchoalveolar lavage:

Bronchogenic carcinoma

*Interoperability*

- CoughFor 3 months

Low fever

A: TB? Ca?

Chest X-ray

Nodule in Right apex

Bronchoalveolar lavage:

Bronchogenic carcinoma

*Interoperability*

- CoughFor 3 months

Low fever

A: TB? Ca?

Chest X-ray

Nodule in Right apex

- CoughFor 3 months

Low fever

A: TB? Ca?

CEN 13606 ExtractsHL7v2 MessagesGarage Software

Interoperability?

- CoughFor 3 months

Low fever

A: TB? Ca?

Chest X-ray

Nodule in Right apex

Bronchoalveolar lavage:

Bronchogenic carcinoma

IHEHL7IHTSDOISOWHOSNOMED CTICDxCENASTMCDAEN13606-1CCRv2 messagesv3 messagesData typesPDQCCOWHSSPPIXHISARIDXDSPMACEN13606-4RBACEN13606-3EN13606-2TemplatesDocumentsSecurityServicesContent modelsTerminologyFonte: Thomas Beale, EFMI 2008

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 informao

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 informao sobre o parto no Sistema de Informaes Hospitalares no Municpio 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 standardised EHR reference model, i.e. the EHR information architecture, between the sender (or sharer) and receiver of the information,

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,

A standardised set of domain-specific concept models, i.e. archetypes and templates for clinical, demographic, and other domain-specific concepts, and

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 SystemsNameDefinitionImplementedFree and Open

ISO/CENStandardYesNo

HL7Specification and StandardYesNo

openEHRSpecification and StandardYesYes

MLHIMSpecification and StandardYesYes

The MLHIM and openEHR SpecificationsMultilevel (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 ModelsReference ModelKnowledge Modelling (CCDs or Archetypes)*

MLHIM and openEHR specifications

Your application (EHR, CPOE etc)

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.orghttp://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 Foundations CKM is proprietary)

The Healthcare Knowledge Component Repository Project:

Repository of the XML Schemas of CCDs

Based on Plone 4

Functionalities:

All the famous Plones CMS and WFM features

XML Schema validation

API to CDD, OSHIP and the Multilevel Authoring for Guidelines (MAG)

https://launchpad.net/hkcr

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 ConclusionsI 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

Whats next:

Invite more partners to participate (government, academy, industry, third sector, FLOSS community)

Go to work!

Thank you!

lutricav@vm.uff.brJoin us:

http://www.mlhim.orghttps://launchpad.net/mlhim

Special Thanks to:Tim CookMike BainbridgeSergio Freire