Data Standards
Enabling recruitment and outcomes research
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.
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.
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
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
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
Evolving model
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.