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Secondary Use of Patient Data for

Research and Quality Improvements:


Tips,
ps, Tricks,
c s, Tools,
oo s, Troubles,
oub es, Triumphs
u p s
and other Topics

Deborah H Batson The Childrens Hospital Denver


Michael G Kahn, MD, PhD University of Colorado, Denver

Supported by The Childrens Hospital Research Institute and the NIH/NCRR Colorado CTSI Grant Number UL1
RR025780. Its contents are the authors sole responsibility and do not necessarily represent official NIH views
Secondary Use

Use of health care data in addition to direct


patient care
Monitor and analyze quality of care
Promote public health surveillance
Improve patient care through research
Monitor quality of health care data
Aggregation and analysis of data collected
during routine patient care across patient sets
Some Use Cases
Data quality analysis
Health care quality and outcomes metrics
Research aggregates
Public health surveillance
Public health security
Disease registry participation
Market trending and analysis
Patient access to health care data
Unstructured data mining
Phenotypic/genotypic correlation analysis
TCH CI Use Cases

Data quality analysis


Health care quality and outcomes metrics
Research aggregates
Public health surveillance
Public health security/bio-surveillance
Disease registry participation
Market trending and analysis
Patient access to health care data
Mining of unstructured data
Phenotypic/genotypic correlation analysis
Rich sources of data
Clinical data
EMR Electronic Medical Record
LIS Laboratory
L b t Information
I f ti Systems
S t
DSS Decision Support Systems
National data collections
Registries
Collaboratives
Public datasets
Research data collection
Radiology and Pathology Annotations
Administrative data Finance and Billing
g p
Demographic data - EMR
Data Requests at TCH

Distribution of Data Requests 2002-2008

other-operations

finance-operations research

quality

finance

operations
Ts

Troubles
Tips
Tricks
Tools
p
Triumphs
Big Trouble
Standard terminologies
Whats a census?
Whats an encounter?
Units
U it off measure?
?L Lab
b collection
ll ti diff
differences?
?MMedication
di ti d dose changes?
h ?
Patient identification
List all clinic patients
Who are my y research p
patients?
EMR has one identifier
LIS may have another
Research records may have distinct identifier
Data Quality
Married 6 year olds!
Missing data, nulls, invalid dates
Impact of work flow assumptions
How we collect data impacts the interpretation of the data
Trouble: Four Examples
1. Too much data
Insufficientlyy bounded q
query
y returns too many
y
patients
2. Bad assumptions
Thats not what I wanted AT ALL!
3. Alternate realities
Finance vs Clinical definitions of complex patient
4. Data in text notes
Clinical systems built for provider adoption use
different workflows than research systems
Hematology

Trouble: Too much data


Use Case: Hematology: DVT cases 2007-09
First pass: many thrombosis dx - 3000 pts
Second pass: deep vein thrombosis - 345 pts
Third pass: acquired during inpatient stay - 84 pts
TOOLS
i2b2 iterative data research
Seek data from other databases when one isnt
enough
Chart review is sometimes the ONLY & right tool
ED: The Big Dip
Trouble: Bad assumptions
Client assumptions
p based on unknown data
relationships
Analyst assumptions based on large request
Use Case: Emergency Department
Which ED crowding indicators predict delayed care in
ED treatment?
Large, complex data set in several dimensions
TIP
Work together in increments
Integrated Service Discovery
Trouble: Alternate realities
Use Case: find ppatients across three
subspecialties to create new medical service
Clinical criteria: 145 patients
Financial criteria: 70 patients
Finance preferred the larger number!
Missed cases because of billing assumptions on really
REALLY expensive patients
After removing financial outliers, 100 patients met criteria
TRIUMPH
New integrated service is in planning stage
Urology
Trouble: Data in Text
Use Case: Urologygy Outcomes
Data request for surgical outcomes expressed in
post-surgical clinical follow-up notes
TRICK
Concept enabled notes
Near-discrete
Near discrete unstructured
nstr ct red data going for
forward
ard
Prospective-only solution, need NLP
TRIUMPH
Urologist became an advocate for structured data
entry
Triumph: Result of Urology Report

Requests now look like this:


Please generate a report on ANY pt. that has one of
the below listed clinical enabled concepts for Urology:
19918
21486
21491
Summary

Troubles Ts

Too Much Data Tools: iterative research into data; iterative


visits with investigator

Bad Assumptions Tip: small


small dips
dips of data

Alternate Realities Triumph!

Data in Text Trick: concept-enabled notes


Triumph: structured data champion
Terribles
Trudging through the data tundra
Queries that never end
Poorly formed hypothesis
Poor scientific method in the study design
NO STUDY DESIGN!
Non-testable measures
Ever-expanding
Ever expanding fishing expeditions
Thats nice, but now can we look at
S t r e t c h i n g IRB and analyst boundaries
Other TCH Tools

Business intelligence
Reporting software
Aggregating software
Research-specific tools
Human intelligence
Data request triage
Marriage: clinical / technical backgrounds
Thursdays
Collaboration
Clinical Informatics ((Research and Quality)
y)
Clinical Applications Services (Operations)
Surgical Services
Ambulatory Services
Finance
HIM
Security
IRB
Thursday Meetings
Team sharing
Review all open
p requests
q for the week
Share techniques and data sources
Unused meeting time
Review interesting or difficult queries
Introduce new knowledge
Data
D t source updates
d t
Tools
Tricks of the trade
Thursday Meetings

Connect clinical data silos


Analysts are distributed throughout the hospital
Some IS, many not in IS
Departments have independent analystsy / domain
experts
Weekly sessions around a table benefit all
Functionally
F ti ll operates
t as a centralized
t li d BI staff
t ff
Example
Users request for clinical notes AND billing data
Team approach
pp
Operations
Physician billing
Hospital finance
Clinical
Resource library
Dense body of knowledge in complete reports to
draw on
Library of reports
Human resources
Data Validation
Second set of eyes
SOP: data isnt delivered without review
Pro: better data validation
Challenge: scarcity of time and people
Describe assumptions of the problem and strategy of
solution
Knowledge sharing
Beware: analysts share a set of assumptions and a
data source bias
Discussion

Use cases
Unique techniques
Troubles
Tips
Tricks
Tools
Triumphs
Contacts

Michael G. Kahn MD, PhD Deborah H. Batson


Associate Professor Clinical Research Data Warehouse Architect
Department of Clinical Informatics
Section of Pediatric Epidemiology
The Children's Hospital
Department of Pediatrics
13123 East 16th Avenue Box 400
Co-Director, Colorado Clinical and Translational Sciences Institute
Aurora, CO 80045
Core Director, CCTSI Biomedical Informatics
University of Colorado Denver

Director, Clinical Informatics Batson.Deborah@tchden.org


Quality and Patient Safety
The Children's Hospital (720) 777 5704
Aurora, Colorado (720) 777 7300 fax

Kahn.Michael@tchden.org
720-777-6407

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