APTA Combined Sections Meeting 2018 | New Orleans, LA USA

Data Standards
Enabling recruitment and outcomes research

Daniel J. Vreeman, PT, DPT, MS, FACMI

Regenstrief-McDonald Scholar in Data Standards
Indiana University School of Medicine

Director, LOINC and Health Data Standards

@djvreeman Regenstrief Center for Biomedical Informatics

https://danielvreeman.com/csm2018 © 2018
Disclosure
I’m the author of the book LOINC Essentials published by Blue Sky Premise, LLC
where I serve as President.

Lots of other funders for data standards work:

U.S. National Library of Medicine

U.S. Food and Drug Administration
U.S. Centers for Medicare and Medicaid Services
National Heart, Lung, and Blood Institute
National Center for Advancing Translational Sciences
American Physical Therapy Association
bioMérieux
Duke University
Radiological Society of North America
I could give a one sentence
description of “informatics”

Yes
Yes, but don’t ask me to do it now
Only if you let me Google it first
Biomedical informatics (BMI)
The interdisciplinary field that
studies and pursues the effective
uses of biomedical data,
information, and knowledge for
scientific inquiry, problem
solving and decision making,
motivated by efforts to improve
human health.

https://www.amia.org/biomedical-informatics-core-competencies
 Human 

+
 Human
Computer

Friedman CP. A "fundamental theorem" of biomedical informatics. J Am Med Inform Assoc. 2009 Mar-Apr;16(2):169-70.PubMed PMID: 19074294;
Where I’m coming from…
 McDonald CJ, Overhage JM, Tierney WM, et al. The Regenstrief Medical Record System: a quarter century experience. Int J Med Inform. 1999 Jun;54(3):225-53. PubMed PMID: 10405881.
McDonald CJ, Overhage JM, Barnes M,et al. The Indiana network for patient care: a working local health information infrastructure. Health Aff (Millwood). 2005 Sep-Oct;24(5):1214-20. PubMed PMID:16162565
“ Our associate dean of
research estimates that
more than 2,000 of the
active human research
studies at IU use parts
of the INPC repository.
McDonald CJ, Overhage JM, Barnes M,et al. The Indiana network for patient care: a working local health information infrastructure. Health Aff (Millwood). 2005 Sep-
Oct;24(5):1214-20. PubMed PMID:16162565
Kho A, Zafar A, Tierney W. Information technology in PBRNs: the Indiana University Medical Group Research Network (IUMG ResNet) experience. J Am Board Fam Med. 2007 Mar-Apr;20(2):196-203. Review. PubMed PMID: 17341757.

Dixon BE, Whipple EC, Lajiness JM, Murray MD. Utilizing an integrated infrastructure for outcomes research: a systematic review. Health Info Libr J. 2016 Mar;33(1):7-32. Epub 2015 Dec 7. Review. PubMed PMID: 26639793.
“ We believe that our success
represents persistent efforts to
build interfaces directly to
multiple independent
instruments and other data
collection systems, using medical
standards such as HL7, LOINC,
and DICOM.

McDonald CJ, Overhage JM, Tierney WM, et al. The Regenstrief Medical Record System: a quarter century experience. Int J Med Inform. 1999 Jun;54(3):225-53.
PubMed PMID: 10405881.
Data, data,
everywhere
 Collect once. Use many.

Clinical care, public health reporting, quality

management, clinical and observational research, etc…

photo via pagedooley | cc-by

Connecting Many Data Sources
Social and community determinants

Lifestyle and behavioral

Health history

Patient-generated
EHR
Genetics
Basic science
photo via Heather | cc-by-sa
MO MONEY MO PROBLEMS
MO DATA MO PROBLEMS
Problems
Clinical data is often scattered among
unconnected Health IT systems.
MO DATA MO PROBLEMS

Those Health IT systems often lack

shared mechanisms for exchanging data.

Even when they do, they use different

ways of identifying the same concept.

Only way to overcome these problems is

with data standards
 Life without Standards
CODE NAME
34626D Arterial BP Diastolic
39312D ABP Diastolic
ARTDIASBP Arterial Diastolic BP
nvArtBPS Arterial Blood Pressure Diastolic
DBP DBP
25284D BP (NIBP)
2737317 Diastolic Blood Pressure #1
6881D BP Diastolic
3800DBP BP
77934D BP Manual Diastolic
919109 Diastolic Blood Pressure
DiastBP DiastolicBP
PBPD PRE BLOOD PRESSURE DIASTOLIC
POBPD POST BLOOD PRESSURE DIASTOLIC
Standards make
health data more
portable and
understandable to
different computer
systems.
 {
"resourceType": "Observation",
"id": "example",
"text": {
"status": "generated",
...
"code": {
"coding": [

Standardized Data
{
"system": "http://loinc.org",
"code": "8462-4",
"display": "Diastolic blood pressure"
}
]
Common structure },
"subject": {
"reference": “Patient/1234"
"display": "Elvis Presley"

Common terminology },
"context": {
"reference": "Encounter/example"
},
"effectiveDateTime": "2018-02-22",
"valueQuantity": {
"value": 90,
"unit": "mmHg",
"system": "http://unitsofmeasure.org",
"code": "mm[Hg]"
}
}
Vreeman DJ, Richoz C. Possibilities and Implications of Using the ICF and Other Vocabulary Standards in Electronic Health Records. Physiother Res Int. 2013 Jul 30;
PMID: 23897840
 Key Point
Data standards enable different
computer systems to share and
understand health data
 Fashioning Fantastic
Clinical Phenotypes
For your trial, observational study, or QA project

photo via JD Hancock

75856-5
#Falls in past 1Y

66247-8
Sit to stand [30 sec]

8454-1
DBP - standing

8460-8
SBP - standing
Richesson RL, Rusincovitch SA, Wixted D, Batch BC, Feinglos MN, Miranda ML, Hammond WE, Califf RM, Spratt SE. A comparison of phenotype definitions for diabetes
mellitus. J Am Med Inform Assoc. 2013 Dec;20(e2):e319-26. doi: 10.1136/amiajnl-2013-001952. Epub 2013 Sep 11. PubMed PMID: 24026307.
Richesson RL, Rusincovitch SA, Wixted D, Batch BC, Feinglos MN, Miranda ML, Hammond WE, Califf RM, Spratt SE. A comparison of phenotype definitions for diabetes
mellitus. J Am Med Inform Assoc. 2013 Dec;20(e2):e319-26. doi: 10.1136/amiajnl-2013-001952. Epub 2013 Sep 11. PubMed PMID: 24026307.
 Key Point
Introspective computer systems with
standardized data can ease the
pain of identifying subjects (patients)
with the phenotype of interest
 Registries and
Research Networks
available from http://www.thepcpi.org
Data elements at multiple levels

Patient, Provider, and Facility-level

Episode-level
Visit-level

Evolving model

Core variables + condition-specific modules

 Example 1st Visit data from APTA Registry

Same standard codes as used in EHRs

Registry has limited data sets on
practices, providers, and patients

Will allow investigators to answer

complex questions about real-
world practice.

Access and governance processes

still under development.
 Key Point
Registries and research networks with
standardized data expand the scale of
feasibility analysis, recruitment, and
outcomes research that is possible
Coming Attractions
Certification to require information be
“accessed, exchanged and used
without special effort” through
technologies such as open application
programming interfaces (API).
Sync for Science

http://syncfor.science
Research Kit

https://www.apple.com/researchkit/
Zens M, Woias P, Suedkamp NP, Niemeyer P. “Back on Track”: A Mobile App Observational Study Using Apple’s ResearchKit Framework JMIR Mhealth Uhealth
2017;5(2):e23. PMID: 28246069
Zens M, Woias P, Suedkamp NP, Niemeyer P. “Back on Track”: A Mobile App Observational Study Using Apple’s ResearchKit Framework JMIR Mhealth Uhealth
2017;5(2):e23. PMID: 28246069
 Research Kit

https://www.apple.com/newsroom/2018/01/apple-announces-effortless-solution-bringing-health-records-to-iPhone/
 Take home lessons:
Standardized clinical data and
interfaces enable diverse IT applications
to intelligently interact.

Partnering with informatics colleagues

can help you unlock and leverage data.

photo via IMLS DCC | cc-by