1

The Importance of Unambiguous The Importance of Unambiguous Medical Terminology in Patient Medical Terminology in Patient

Care and ResearchCare and ResearchOr, why doctors and healthcare administrators Or, why doctors and healthcare administrators

shouldn’t glaze over when informatics is shouldn’t glaze over when informatics is discusseddiscussed

Robert M Califf MDRobert M Califf MD

Vice Chancellor for Clinical ResearchVice Chancellor for Clinical Research

Duke UniversityDuke University

2

The Information SituationThe Information Situation

We are increasingly able to assimilate We are increasingly able to assimilate information about the health of people when information about the health of people when measurements are made by machinesmeasurements are made by machines

Lab dataLab data

ImagesImages

Test results (ECG, PFTs, etc)Test results (ECG, PFTs, etc)

Genomics, proteomics, metabolomics, etc.Genomics, proteomics, metabolomics, etc.

What are we missing?What are we missing?

The synthetic terms that tie the raw data into The synthetic terms that tie the raw data into actionable constructs about a personactionable constructs about a person

3

Clinical TerminologyClinical Terminology

We have excellent compliance with terms when We have excellent compliance with terms when they are required for billingthey are required for billing

Unfortunately, these terms for billing are not Unfortunately, these terms for billing are not the same as the preferred terms for clinical the same as the preferred terms for clinical quality or research assessmentquality or research assessment

If billing, patient care and research terminology If billing, patient care and research terminology come together, we can make monumental come together, we can make monumental strides in clinical quality at all levels (patient, strides in clinical quality at all levels (patient, practice, system, ? Population)practice, system, ? Population)

4

5

People are dying People are dying because we don’t use because we don’t use the same names for the the same names for the same things!same things!

6

A PatientA Patient

60 yo woman admitted to the ED with “chest 60 yo woman admitted to the ED with “chest pain”pain”

HR 100, sinus rhythm, BP 100/70, exam HR 100, sinus rhythm, BP 100/70, exam unremarkableunremarkable

ECG: sinus rhythm, ST segments abnormalECG: sinus rhythm, ST segments abnormal

Labs: K 4.2, creatinine 1.5, LDL 130, troponin WNLLabs: K 4.2, creatinine 1.5, LDL 130, troponin WNL

CXR: no abnormalities apparent in CV, lung, bone or CXR: no abnormalities apparent in CV, lung, bone or tissue structurestissue structures

7

Possible Clinical SituationsPossible Clinical Situations

Mild throat tightness relieved with MylantaMild throat tightness relieved with Mylanta

Ripping pain going down the backRipping pain going down the back

Midsternal chest pain, relieved after 2Midsternal chest pain, relieved after 2ndnd NTG NTG

Pleuritic chest pain and extreme shortness of Pleuritic chest pain and extreme shortness of breathbreath

Stabbing pain that lasts a few seconds and Stabbing pain that lasts a few seconds and then goes awaythen goes away

8

First AHRQ Unstable Angina Guidelines (1994)First AHRQ Unstable Angina Guidelines (1994)

Eugene Braunwald, ChairEugene Braunwald, Chair

Bob Jones (Duke) coordinating contractBob Jones (Duke) coordinating contract

Largest RCT 650 patients with very few clinical Largest RCT 650 patients with very few clinical outcome studiesoutcome studies

Recommendations largely based on “expert Recommendations largely based on “expert opinion”opinion”

Then,….Then,….

The terminology got fixed!The terminology got fixed!

The Great Baltimore Fire—No Standards!The Great Baltimore Fire—No Standards!

10

Great Baltimore Fire of 1904Great Baltimore Fire of 1904

One reason for the fire's duration was the lack of One reason for the fire's duration was the lack of national national standardsstandards in fire-fighting equipment. Fire crews in fire-fighting equipment. Fire crews fire enginesfire engines came from as far away as came from as far away as PhiladelphiaPhiladelphia and and Washington that day (units from Washington that day (units from New York CityNew York City were on were on the way, but were blocked by a train accident; they the way, but were blocked by a train accident; they arrived the next day). The crews brought their own arrived the next day). The crews brought their own equipment. Most could only watch helplessly when they equipment. Most could only watch helplessly when they discovered that their hoses could not fit Baltimore's discovered that their hoses could not fit Baltimore's hydrants. High winds and freezing temperatures added hydrants. High winds and freezing temperatures added to the difficulty for firefighters and further contributed to to the difficulty for firefighters and further contributed to the severity of the fire. As a result, the fire burned over the severity of the fire. As a result, the fire burned over 30 hours, destroying 1,545 buildings spanning 70 city 30 hours, destroying 1,545 buildings spanning 70 city blocks — amounting to over 140 acres.blocks — amounting to over 140 acres.

Wikipedia 2009

11

Great Baltimore FireGreat Baltimore Fire

While Baltimore was criticized for its hydrants, this was a While Baltimore was criticized for its hydrants, this was a problem that was not unique to Baltimore. During the problem that was not unique to Baltimore. During the time of the Great Fire "American cities had more than six time of the Great Fire "American cities had more than six hundred different sizes and variations of fire hose hundred different sizes and variations of fire hose couplings." It is known that as outside fire fighters couplings." It is known that as outside fire fighters returned to their home cities they gave interviews to returned to their home cities they gave interviews to newspapers that condemned Baltimore and talked up newspapers that condemned Baltimore and talked up their own actions during the crisis. In addition, many their own actions during the crisis. In addition, many newspapers were guilty of taking for truth the word of newspapers were guilty of taking for truth the word of travelers who, in actuality, had only seen the fire as their travelers who, in actuality, had only seen the fire as their trains passed through the area. All of this aside the trains passed through the area. All of this aside the responding agencies and their equipment did prove responding agencies and their equipment did prove useful as their hoses only represented a small part of the useful as their hoses only represented a small part of the equipment brought with them. One benefit to this equipment brought with them. One benefit to this tragedy was the standardization of hydrants nationwidetragedy was the standardization of hydrants nationwide

Wikipedia 2009Wikipedia 2009

12

The Learning Health System at All LevelsThe Learning Health System at All Levels

Individual health care transactionsIndividual health care transactions

ProviderProvider

ConsumerConsumer

Clinic and health system qualityClinic and health system quality

ResearchResearch

Early phaseEarly phase

New productsNew products

Comparative effectivenessComparative effectiveness

Population level qualityPopulation level quality

13

UC Project for Global InequalityUC Project for Global Inequality

The Cost of a Long LifeThe Cost of a Long Life

U.S.

The Cycle of Quality: Generating Evidence to The Cycle of Quality: Generating Evidence to Inform PolicyInform Policy

Califf RM et al, Califf RM et al, Health Affairs, 2007Health Affairs, 2007

Measurement Measurement andand

EducationEducation

Measurement Measurement andand

EducationEducation

Early Translational

Steps

Early Translational

Steps

ClinicalTrials

ClinicalTrials

ClinicalPractice

Guidelines

ClinicalPractice

Guidelines

PerformanceMeasures

PerformanceMeasures

OutcomesOutcomes

Discovery ScienceDiscovery Science

DataDataStandardsStandards

DataDataStandardsStandards

NetworkNetworkInformationInformation

NetworkNetworkInformationInformation

EmpiricalEmpiricalEthicsEthics

EmpiricalEmpiricalEthicsEthics

PrioritiesPrioritiesand Processesand Processes

PrioritiesPrioritiesand Processesand Processes

InclusivenessInclusivenessInclusivenessInclusiveness

Use forUse forFeedbackFeedback

on Prioritieson Priorities

Use forUse forFeedbackFeedback

on Prioritieson Priorities

Conflict-of-interestConflict-of-interestManagementManagement

Conflict-of-interestConflict-of-interestManagementManagement

Evaluation of SpeedEvaluation of Speedand Fluencyand Fluency

Evaluation of SpeedEvaluation of Speedand Fluencyand Fluency

Pay forPay forPerformancePerformance

Pay forPay forPerformancePerformance

TransparencyTransparencyto Consumersto ConsumersTransparencyTransparencyto Consumersto Consumers

FDAFDACritical PathCritical Path

FDAFDACritical PathCritical Path

NIH RoadmapNIH RoadmapNIH RoadmapNIH Roadmap12 3

4

5

6

7

8

910

11

12

NSTEMI

Presentation

Working Dx

ECG

CardiacBiomarker

Final DxNQMI Qw MI

UA

UnstableAngina

Ischemic DiscomfortAcute Coronary Syndrome

Myocardial Infarction

ST Elevation

No ST Elevation

Non-ST ACS

Libby P. Circulation 2001;104:365, Hamm CW, Bertrand M, Braunwald E, Lancet 2001; 358:1533-1538; Davies MJ. Heart 2000; 83:361-366.Anderson JL, et al. J Am Coll Cardiol. 2007;50:e1-e157, Figure 1. Reprinted with permission.

6 Medical Therapies Proven to Reduce Death6 Medical Therapies Proven to Reduce Death Reduction in deaths:Reduction in deaths:

TherapyTherapy # pts# pts RelativeRelative AbsoluteAbsolute C/EC/E

MI:MI: AspirinAspirin 18,77318,773 23%23% 2.4%2.4% ++++++++++

FibrinolyticsFibrinolytics 58,00058,000 18%18% 1.8%1.8% ++++++++

Beta blockerBeta blocker 28,97028,970 13%13% 1.3%1.3% ++++++++

ACE inhibitorACE inhibitor 101,000101,000 6.5%6.5% .6%.6% ++

2nd prev: Aspirin 54,360 15% 1.2% +++++

Beta blocker 20,312 21% 2.1% ++++

StatinsStatins 17,61717,617 23%23% 2.7%2.7% ++++++++

ACE inhibitor 9,297 17% 1.9% ++++

CHF: ACE inhibitor 7,105 23% 6.1% +++++

Beta blocker 12,385 26% 4% +++++

SpironolactoneSpironolactone 1,6631,663 30%30% 11%11% ++++++++++

Goals for CRUSADE:Goals for CRUSADE: Improve Adherence to ACC/AHA Guidelines for Improve Adherence to ACC/AHA Guidelines for Patients with Unstable Angina/Non-STEMIPatients with Unstable Angina/Non-STEMI

Acute TherapiesAcute Therapies

AspirinAspirin

ClopidogrelClopidogrel

Beta BlockerBeta Blocker

Heparin (UFH or LMWH)Heparin (UFH or LMWH)

Early CathEarly Cath

GP IIb-IIIa InhibitorGP IIb-IIIa Inhibitor

All receiving cath/PCIAll receiving cath/PCI

Discharge TherapiesDischarge Therapies

AspirinAspirin

ClopidogrelClopidogrel

Beta BlockerBeta Blocker

ACE Inhibitor ACE Inhibitor

Statin/Lipid LoweringStatin/Lipid Lowering

Smoking CessationSmoking Cessation

Cardiac RehabilitationCardiac Rehabilitation

Circulation, JACC 2002 — ACC/AHA Guidelines updateCirculation, JACC 2002 — ACC/AHA Guidelines update

Evaluating the Process of CareEvaluating the Process of Care

An adherence score is applied to each patient. An adherence score is applied to each patient. incorporating the components of process of care.incorporating the components of process of care.

The score from each patient then combined for all The score from each patient then combined for all patients at each hospital. patients at each hospital. Typical scores ranged from 50 to 95%.Typical scores ranged from 50 to 95%.

All 400 hospital adherence scores then ranked in All 400 hospital adherence scores then ranked in quartiles — best to worst.quartiles — best to worst.

Evaluating the Process of CareEvaluating the Process of Care

An adherence score is applied to each patient. An adherence score is applied to each patient. incorporating the components of process of care.incorporating the components of process of care.

The score from each patient then combined for all The score from each patient then combined for all patients at each hospital. patients at each hospital. Typical scores ranged from 50 to 95%.Typical scores ranged from 50 to 95%.

All 400 hospital adherence scores then ranked in All 400 hospital adherence scores then ranked in quartiles — best to worst.quartiles — best to worst.

CRUSADE: CRUSADE: Overall Adherence Score Trends Over TimeOverall Adherence Score Trends Over Time

68.1%69.6%

71.0%72.3%

73.0% 73.6%75.2%

77.9% 78.0%79.3%

60%

70%

80%

Q1'02

Q4'02

Q3'03

Q2'04

Peterson et al, ACC 2004Peterson et al, ACC 2004

CRUSADE: Link Between Overall ACC/AHA CRUSADE: Link Between Overall ACC/AHA Guidelines Adherence and MortalityGuidelines Adherence and Mortality

0

2

4

6

8

<=25% 25–50% 50–75% >=75%

Hospital Composite Quality Quartiles

% In

-ho

spit

al M

ort

alit

y Adjusted Unadjusted

Every 10% in guidelines adherence 11% in mortality

Impact of Quality Impact of Quality Improvement on Outcomes Improvement on Outcomes

in ACSin ACS

Trilogy in American Heart JournalTrilogy in American Heart Journal

January 2009January 2009

Treatment of STEMI PatientsTreatment of STEMI Patients

19901990 20062006

FibrinolysisFibrinolysis 52.5%52.5% 27.6%27.6%

Primary PCIPrimary PCI 2.6%2.6% 43.2%43.2%

D2N time*D2N time* 59 min59 min 29 min29 min

In-hosp mortalityIn-hosp mortality 7%7% 6%6%

D2B time**D2B time** 111 min111 min 79 min79 min

*Fibrinolysis-eligible pts who rec’d fibrinolysis**Non-transfer pts who rec’d primary PCI since 1994

Acute Therapy Acute Therapy TrendsTrends

0

10

20

30

40

50

60

70

80

90

100

0

10

20

30

40

50

60

70

80

90

100

0

10

20

30

40

50

60

70

80

90

100

1990 1993 1996 1999 2002 2005

0

10

20

30

40

50

60

70

80

90

100

1990 1993 1996 1999 2002 2005

STEMISTEMISTEMISTEMI

NSTEMINSTEMINSTEMINSTEMI

% A

dh

ere

nc

e%

Ad

he

ren

ce

% A

dh

ere

nc

e%

Ad

he

ren

ce

AspirinAspirinAspirinAspirin

Beta blockersBeta blockersBeta blockersBeta blockers

Any heparinAny heparinAny heparinAny heparin

STEMISTEMISTEMISTEMI

NSTEMINSTEMINSTEMINSTEMI

% A

dh

ere

nc

e%

Ad

he

ren

ce

% A

dh

ere

nc

e%

Ad

he

ren

ce

AspirinAspirinAspirinAspirin

Beta blockersBeta blockersBeta blockersBeta blockers

Lipid-lowering agentLipid-lowering agentLipid-lowering agentLipid-lowering agent

Discharge Discharge Therapy TrendsTherapy Trends

0

10

20

30

40

50

60

70

80

90

100

0

10

20

30

40

50

60

70

80

90

100

0

10

20

30

4050

60

70

80

90

100

1994 1997 2000 2003 2006

0

10

20

30

4050

60

70

80

90

100

1994 1997 2000 2003 2006

In-hospital Mortality 1994–2006In-hospital Mortality 1994–2006

1994 2006

Overall 10.4% 6.3%

STEMI 11.5% 8.0%

NSTEMI 7.1% 5.2%

In 20 Years…In 20 Years…

All people in developed nations will have —All people in developed nations will have —

An electronic health recordAn electronic health record

Biological samplesBiological samples

Digitized imagesDigitized images

Healthcare will be personalized using an individual’s Healthcare will be personalized using an individual’s images, samples and clinical data.images, samples and clinical data.

The health of a community will be monitored using The health of a community will be monitored using aggregate records.aggregate records.

26

GenomeGenometcagcgatagcgctagagcggctctctaggatctctagagctcgactaaagctctagcgcttagctagcgatcgagctagcgcgggcgctcgcgctcgcgctagagcctagcgactacgatccgagctcgagctacgacgactcacgggctcgaagctacgcgcgatcgacgctcgtttccgcggacgctcgagctagcagcgatcgacgactacgagactacgactacgactatcagcgatcgacatcaggccctcaaagcgctagacatcagcactacagcactacgacatcagcatcacgtacgacgactaccgacactacgacgatcagactacacgacgctcgcatcagctttagcgctcagacgctatggcggactacggctagctgatcgactaagcgatcgacatcagatcgggatcgcgctcatttcggcgatactagcgactacacgtcaaggctaaacgccctacgcatcgctcccgcgcgcatatcgcatcgatcgatcagatcgatgctacgtcagcgatagcgctagagcggctctctaggatctctagagctcgactaaagctctagcgcttagctagcgatcgagctagcgcgggcgctcgcgctcgcgctagagcctagcgactacgatccgagctcgagctacgacgactcacgggctcgaagctacgcgcgatcgacgctcgtttccgcggacgctcgagctagcagcgatcgacgactacgagactacgactacgactatcagcgatcgacatcaggccctcaaagcgctagacatcagcactacagcactacgacatcagcatcacgtacgacgactaccgacactacgacgatcagactacacgacgctcgcatcagctttagcgctcagacgctatggcggactacggctagctgatcgactaagcgatcgacatcagatcgggatcgcgctcatttcggcgatactagcgactacacgtcaaggctaaacgccctacgcatcgctcccgcgcgcatatcgcatcgatcgatcagatcgatgctactcagcgatagcgctagagcggctctctaggatctctagagctcgactaaagctctagcgcttagctagcgatcgagctagcgcgggcgctcgcgctcgcgctagagcctagcgactacgatccgagctcgagctacgacgactcacgggctcgaagctacgcgcgatcgacgctcgtttccgcggacgctcgagctagcagcgatcgacgactacgagactacgactacgactatcagcgatcgacatcaggccctcaaagcgctagacatcagcactacagcactacgacatcagcatcacgtacgacgactaccgacactacgacgatcagactacacgacgctcgcatcagctttagcgctcagacgctatggcggactacggctagctgatcgactaagcgatcgacatcagatcgggatcgcgctcatttcggcgatactagcgactacacgtcaaggctaaacgccctacgcatcgctcccgcgcgcatatcgcatcgatcgatcagatcgatgctacgtcagcgatagcgctagagcggctctctaggatctctagagctcgactaaagctctagcgcttagctagcgatcgagctagcgcgggcgctcgcgctcgcgctagagcctagcgactacgatccgagctcgagctacgacgactcacgggctcgaagctacgcgcgatcgacgctcgtttccgcggacgctcgagctagcagcgatcgacgactacgagactacgactacgactatcagcgatcgacatcaggccctcaaagcgctagacatcagcactacagcactacgacatcagcatcacgtacgacgactaccgacactacgacgatcagactacacgacgctcgcatcagctttagcgctcagacgctatggcggactacggctagctgatcgactaagcgatcgacatcagatcgggatcgcgctcatttcggcgatactagcgactacacgtcaaggctaaacgccctacgcatcgctcccgcgcgcatatcgcatcgatcgatcagatcgatgctactcagcgatagcgctagagcggctctctaggatctctagagctcgactaaagctctagcgcttagctagcgatcgagctagcgcgggcgctcgcgctcgcgctagagcctagcgactacgatccgagctcgagctacgacgactcacgggctcgaagctacgcgcgatcgacgctcgtttccgcggacgctcgagctagcagcgatcgacgactacgagactacgactacgactatcagcgatcgacatcaggccctcaaagcgctagacatcagcactacagcactacgacatcagcatcacgtacgacgactaccgacactacgacgatcagactacacgacgctcgcatcagctttagcgctcagacgctatggcggactacggctagctgatcgactaagcgatcgacatcagatcgggatcgcgctcatttcggcgatactagcgactacacgtcaaggctaaacgccctacgcatcgctcccgcgcgcatatcgcatcgatcgatcagatcgattcagcgatagcgctagagcggctctctaggatctctagagctcgactaaagctctagcgcttagctagcgatcgagctagcgcgggcgctcgcgctcgcgctagagcctagcgactacgatccgagctcgagctacgacgactcacgggctcgaagctacgcgcgatcgacgctcgtttccgcggacgctcgagctagcagcgatcgacgactacgagactacgactacgactatcagcgatcgacatcaggccctcaaagcgctagacatcagcactacagcactacgacatcagcatcacgtacgacgactaccgacactacgacgatcagactacacgacgctcgcatcagctttagcgctcagacgctatggcggactacggctagctgatcgactaagcgatcgacatcagatcgggatcgcgctcatttcggcgatactagcgactacacgtcaaggctaaacgccctacgcatcgctcccgcgcgcatatcgcatcgatcgatcagatcgatgctactcagcgatagcgctagagcggctctctaggatctctagagctcgactaaagctctagcgcttagctagcgatcgagctagcgcgggcgctcgcgctcgcgctagagcctagcgactacgatccgagctcgagctacgacgactcacgggctcgaagctacgcgcgatcgacgctcgtttccgcggacgctcgagctagcagcgatcgacgactacgagactacgactacgactatcagcgatcgacatcaagcggcttctctatatatactta

GeneGene Genome LifeGenome Life

Reproduced from Moses et al., JAMA 2005;294:1333-42Reproduced from Moses et al., JAMA 2005;294:1333-42

Device firmsDevice firms

Biotech firmsBiotech firms

Pharma firmsPharma firms

Federal—Federal—non-NIHnon-NIH

State/localState/local

Source:Source:

PrivatePrivate

NIHNIH

19941994 1995 1995 1996 1996 1997 1997 19981998 19991999 20002000 20012001 20022002 20032003

100 –100 –

80 –80 –

60 –60 –

40 –40 –

20 –20 –

0 –0 –

Fu

nd

ing

($

in b

illio

ns

)F

un

din

g (

$ in

bill

ion

s)

363505

868

424

848

1272

0

500

1000

1500

Preclinical** Clinical Total

Mill

ion

s (2

004$

)

Original** 2004 Time Adjusted***

** All R&D costs (basic research and preclinical development) prior to initiation of clinical testing** All R&D costs (basic research and preclinical development) prior to initiation of clinical testing*** Based on a 5-year shift and prior growth rates for the preclinical and clinical periods*** Based on a 5-year shift and prior growth rates for the preclinical and clinical periods

DiMasi et al. 2003DiMasi et al. 2003

Comparative Pre-Approval Capitalized Comparative Pre-Approval Capitalized Costs per Approved New MoleculeCosts per Approved New Molecule

Innovation Gap Getting WiderInnovation Gap Getting Wider

26 2522

28

53

39

30

35

2724

1721

16

11

$39.40

$11.50

0

20

40

60

1992

1993

1994

1995

1996

1997

1998

1999

2000

2001

2002

2003

2004

2005

NMEs (New Drug Approvals)

PhRMA Member R&D Spending

Burrill & CompanyBurrill & Company

Pharma Innovation

Gap

Pharma Innovation

Gap

““Real” Clinical Trials—Done in the Setting of Real” Clinical Trials—Done in the Setting of Health Care DeliveryHealth Care Delivery

3 sets of data recording3 sets of data recording

Clinical documentationClinical documentation

BillingBilling

Clinical trials documentationClinical trials documentation

Tremendous cost of training for 3 different Tremendous cost of training for 3 different vocabulariesvocabularies

Redundant personnel costs of collecting same Redundant personnel costs of collecting same data in different ways is massivedata in different ways is massive

Clinical Trial Cost EstimatesClinical Trial Cost Estimates

$0

$50

$100

$150

$200

$250

$300

$350

$400

$450

T o tal

Co o rd in atin g Cen ter

S ite Paym en ts

Oth er

Full Cost Industry

Streamlined Industry

More Streamlined

$ In US 2007 Millions

75

77

76

75

70

52

38

78

42

82

81

79

80

73

57

85

0 20 40 60 80 100

Angola

Cambodia

China

US

Cuba

UK

Canada

Japan

Life expectancy (years)

Men

Women

Life Expectancy Around the WorldLife Expectancy Around the World

decision support for patient care, health system, research and communities

poolable, consumable data

data governance

Data governance assures that standards of data use, quality, ownership, access, and institutional compliance are met

Data are now consumable and poolable in an institutional data warehouse (DSR)

clinical research

data

pre-clinical discovery

data

clinical care data

Raw data are collected in care and research activities

These data support building models in critical domains: health and disease, finance and operations disease

modelhealth model

quality model

financial model

These models are integrated back into the clinical and research workflow

businessvalue

DSR

Integrated at “enterprise level”

Disease Registries—Granular, DetailedPrimary

CareCancer

Mental Health

Cardiovascular Etc…

Health System A

Health System B

Etc…

ElectronicHealth Records

Adaptable to all!

Fundamental Informatics Fundamental Informatics Infrastucture--Matrix Infrastucture--Matrix Organizational Structure Organizational Structure

Cardiac Hospitalizations – Counts Cardiac Hospitalizations – Counts & Rates& Rates

Problem List VocabulariesProblem List Vocabularies

Dr. Kim Wah FungDr. Kim Wah Fung

National Library of MedicineNational Library of Medicine

The problem listThe problem list

The problem list is a powerful way to organize and The problem list is a powerful way to organize and communicate clinical data and reasoning - recommended communicate clinical data and reasoning - recommended as an essential feature of an electronic medical record as an essential feature of an electronic medical record (EMR)(EMR)

Often the first (if not the only) part of clinical narration in Often the first (if not the only) part of clinical narration in an EMR that uses a controlled vocabularyan EMR that uses a controlled vocabulary

Most institutions develop and use their own problem list Most institutions develop and use their own problem list vocabulariesvocabularies Often linked to ICD codes for billing or reportingOften linked to ICD codes for billing or reporting Some are mapped to SNOMED CTSome are mapped to SNOMED CT

37

Goals of researchGoals of research

To study the problem list vocabularies of large health care To study the problem list vocabularies of large health care institutions - size, pattern of use and the extent to which institutions - size, pattern of use and the extent to which they overlap with (or differ from) each otherthey overlap with (or differ from) each other

To identify a CORE (To identify a CORE (CClinical linical OObservations bservations RRecording and ecording and EEncoding) set of terms that are of high usage in most ncoding) set of terms that are of high usage in most problem listsproblem lists

38

The CORE subsetThe CORE subset

The set of concepts that often appear in problem list The set of concepts that often appear in problem list vocabularies and are frequently usedvocabularies and are frequently used

Ways to use this subsetWays to use this subset As a ‘starter set’ to build local problem list vocabularies. If As a ‘starter set’ to build local problem list vocabularies. If

subsequent local extensions can be added in a standardized way, subsequent local extensions can be added in a standardized way, the divergence of these vocabularies can be minimizedthe divergence of these vocabularies can be minimized

Existing problem list vocabularies can be mapped to the CORE Existing problem list vocabularies can be mapped to the CORE conceptsconcepts

BenefitsBenefits Reduce variability of problem list vocabulariesReduce variability of problem list vocabularies Facilitate sharing of problem list dataFacilitate sharing of problem list data

39

Desirable features of the CORE subsetDesirable features of the CORE subset

High coverage of usageHigh coverage of usage Small number of conceptsSmall number of concepts Linkable to standard terminologiesLinkable to standard terminologies Supports reasoningSupports reasoning Supports a standard mechanism for adding local Supports a standard mechanism for adding local

extensionsextensions

40

41

42

Effective Methods of Getting the Attention of Effective Methods of Getting the Attention of Doctors and Health System AdministratorsDoctors and Health System Administrators

Appeal to humanitarian instinctAppeal to humanitarian instinct

Publicity for doing goodPublicity for doing good

Shame for doing badShame for doing bad

Distribute $34 Billion!Distribute $34 Billion!

43

It will be shameful is some portion of that $34 It will be shameful is some portion of that $34 billion allocation is not devoted to finalizing a core billion allocation is not devoted to finalizing a core terminology that is agreed to by all sectorsterminology that is agreed to by all sectors

Payors Payors

Government and privateGovernment and private

Provider groupsProvider groups

Primary care and specialtiesPrimary care and specialties

Research regulatorsResearch regulators

FDA, NIH, CMS, VA, DODFDA, NIH, CMS, VA, DOD

Pharma, DevicesPharma, Devices

With international harmonizationWith international harmonization

44

How do we resolve the “Tower of Babel” of data from How do we resolve the “Tower of Babel” of data from EHRs, PHRs, registries, databases, literature, and EHRs, PHRs, registries, databases, literature, and clinical trials?clinical trials?