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The Importance of Unambiguous Medical Terminology in Patient Care and Research. Or, why doctors and healthcare administrators shouldn’t glaze over when informatics is discussed Robert M Califf MD Vice Chancellor for Clinical Research Duke University. The Information Situation.

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The importance of unambiguous medical terminology in patient care and research l.jpg

The Importance of Unambiguous Medical Terminology in Patient Care and Research

Or, why doctors and healthcare administrators shouldn’t glaze over when informatics is discussed

Robert M Califf MD

Vice Chancellor for Clinical Research

Duke University

The information situation l.jpg
The Information Situation Care and Research

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

    • Lab data

    • Images

    • Test results (ECG, PFTs, etc)

    • Genomics, proteomics, metabolomics, etc.

  • What are we missing?

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

Clinical terminology l.jpg
Clinical Terminology Care and Research

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

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

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

A patient l.jpg
A Patient the same things!

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

    • HR 100, sinus rhythm, BP 100/70, exam unremarkable

    • ECG: sinus rhythm, ST segments abnormal

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

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

Possible clinical situations l.jpg
Possible Clinical Situations the same things!

  • Mild throat tightness relieved with Mylanta

  • Ripping pain going down the back

  • Midsternal chest pain, relieved after 2nd NTG

  • Pleuritic chest pain and extreme shortness of breath

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

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First AHRQ Unstable Angina Guidelines (1994) the same things!

  • Eugene Braunwald, Chair

  • Bob Jones (Duke) coordinating contract

  • Largest RCT 650 patients with very few clinical outcome studies

  • Recommendations largely based on “expert opinion”

  • Then,….

    • The terminology got fixed!

Great baltimore fire of 1904 l.jpg
Great Baltimore Fire of 1904 the same things!

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

    • Wikipedia 2009

Great baltimore fire l.jpg
Great Baltimore Fire the same things!

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

Wikipedia 2009

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The Learning Health System at All Levels the same things!

  • Individual health care transactions

    • Provider

    • Consumer

  • Clinic and health system quality

  • Research

    • Early phase

    • New products

    • Comparative effectiveness

  • Population level quality

The cost of a long life l.jpg
The Cost of a Long Life the same things!


UC Project for Global Inequality

The cycle of quality generating evidence to inform policy l.jpg

3 the same things!





NIH Roadmap


FDACritical Path

Early TranslationalSteps



Discovery Science


Prioritiesand Processes

Measurement andEducation





Transparencyto Consumers





Pay forPerformance


Use forFeedbackon Priorities




Evaluation of Speedand Fluency

The Cycle of Quality: Generating Evidence to Inform Policy

Califf RM et al, Health Affairs, 2007

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Ischemic Discomfort the same things!

Acute Coronary Syndrome


Working Dx


ST Elevation

No ST Elevation








Myocardial Infarction

Final Dx



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.

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6 Medical Therapies Proven to Reduce Death the same things!

Reduction in deaths: Therapy # pts Relative Absolute C/E

MI: Aspirin 18,773 23% 2.4% +++++

Fibrinolytics 58,000 18% 1.8% ++++

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

ACE inhibitor 101,000 6.5% .6% +

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

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

Statins 17,617 23% 2.7% ++++

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

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

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

Spironolactone 1,663 30% 11% +++++

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Acute Therapies the same things!



Beta Blocker

Heparin (UFH or LMWH)

Early Cath

GP IIb-IIIa Inhibitor

All receiving cath/PCI

Discharge Therapies



Beta Blocker

ACE Inhibitor

Statin/Lipid Lowering

Smoking Cessation

Cardiac Rehabilitation

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

Evaluating the Process of Care

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

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

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

Circulation, JACC 2002 — ACC/AHA Guidelines update

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CRUSADE: the same things!Overall Adherence Score Trends Over Time

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

Every 10%  in guidelines adherence 11%  in mortality

Peterson et al, ACC 2004

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Impact of Quality Improvement on Outcomes in ACS and Mortality

Trilogy in American Heart Journal

January 2009

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Treatment of STEMI Patients and Mortality

*Fibrinolysis-eligible pts who rec’d fibrinolysis

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

Acute therapy trends l.jpg
Acute Therapy and MortalityTrends

Beta blockers

Any heparin



% Adherence


Discharge therapy trends l.jpg
Discharge and MortalityTherapy Trends

Beta blockers

Lipid-lowering agent



% Adherence


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In 20 Years… and Mortality

  • All people in developed nations will have —

    • An electronic health record

    • Biological samples

    • Digitized images

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

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

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Genome and Mortality

Genome Life


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100 – and Mortality

80 –

60 –

40 –

20 –

0 –


Device firms

Biotech firms

Funding ($ in billions)

Pharma firms





1994 1995 1996 1997 1998 1999 2000 2001 2002 2003

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

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Comparative Pre-Approval Capitalized Costs per Approved New Molecule

** 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

DiMasi et al. 2003

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Innovation Gap Getting Wider Molecule




Burrill & Company

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

  • 3 sets of data recording

    • Clinical documentation

    • Billing

    • Clinical trials documentation

  • Tremendous cost of training for 3 different vocabularies

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

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Clinical Trial Cost Estimates Care Delivery

$ In US 2007 Millions

Full Cost Industry

Streamlined Industry

More Streamlined

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Fundamental Informatics Infrastucture--Matrix Organizational Structure

Disease Registries—Granular, Detailed

Integrated at “enterprise level”

Primary Care

Mental Health




Health System A

ElectronicHealth Records

Adaptable to all!

Health System B


Problem list vocabularies dr kim wah fung national library of medicine l.jpg

Problem List Vocabularies Structure Dr. Kim Wah FungNational Library of Medicine

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The problem list Structure

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

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

  • Most institutions develop and use their own problem list vocabularies

    • Often linked to ICD codes for billing or reporting

    • Some are mapped to SNOMED CT


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Goals of research Structure

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

To identify a CORE (Clinical Observations Recording and Encoding) set of terms that are of high usage in most problem lists


The core subset l.jpg
The CORE subset Structure

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

  • Ways to use this subset

    • As a ‘starter set’ to build local problem list vocabularies. If subsequent local extensions can be added in a standardized way, the divergence of these vocabularies can be minimized

    • Existing problem list vocabularies can be mapped to the CORE concepts

  • Benefits

    • Reduce variability of problem list vocabularies

    • Facilitate sharing of problem list data


Desirable features of the core subset l.jpg
Desirable features of the CORE subset Structure

High coverage of usage

Small number of concepts

Linkable to standard terminologies

Supports reasoning

Supports a standard mechanism for adding local extensions


Effective methods of getting the attention of doctors and health system administrators l.jpg
Effective Methods of Getting the Attention of Doctors and Health System Administrators

  • Appeal to humanitarian instinct

  • Publicity for doing good

  • Shame for doing bad

  • Distribute $34 Billion!

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

  • Payors

    • Government and private

  • Provider groups

    • Primary care and specialties

  • Research regulators

    • FDA, NIH, CMS, VA, DOD

    • Pharma, Devices

  • With international harmonization

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