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Electronic Health Records Forum | Centers for Disease Control and Prevention

Enabling interoperability for social and


behavioral determinants of health data

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

© 2018 © 2019
Disclosure
I’m President of Blue Sky Premise, LLC which published the book LOINC
Essentials.

I’m PI on a contract from bioMérieux for LOINC content development (and


many federal and non-profit funding sources for LOINC).

This material contains content from LOINC® (http://loinc.org). The LOINC Table, LOINC Table Core, LOINC Panels and Forms File, LOINC Answer
File, LOINC Part File, LOINC Group File, LOINC Document Ontology File, LOINC Hierarchies, LOINC Linguistic Variants File, LOINC/RSNA
Radiology Playbook, and LOINC/IEEE Medical Device Code Mapping Table are copyright © 1995-2018, Regenstrief Institute, Inc. and the Logical
Observation Identifiers Names and Codes (LOINC) Committee and is available at no cost under the license at http://loinc.org/license.
Financial Support for LOINC
Regenstrief Institute RTI International
Regenstrief Foundation Contract 0-312-0209853
U.S. National Library of Medicine John A. Hartford Foundation
Contracts NO1-LM-4-3510, N01-LM-6-3546, N01- Agency for Health Care Policy and Research
LM-9-3517, and HHSN276200800006C, Grants HS 08750 and HS 07719-03
HHSN276201400138P, HHSN276201400239P
Centers for Disease Control and Prevention
U.S. Food and Drug Administration
Grant and Contracts R13/CCR517099 and H75/
Contract HHSF223201710178P CCH520501
American Physical Therapy Association Centers for Medicare and Medicaid Services
bioMérieux
Contract HHSM-500-2016-00040C
Indiana Clinical and Translational Sciences Institute National Center for Advancing Translational Sciences
California Healthcare Foundation Grant 3UL1TR001108-04S1
Radiological Society of North America through the National
National Institute of Diabetes and Digestive and Kidney
Institute of Biomedical Imaging and Bioengineering
Diseases
Contract HHSN268201500247A Contract HHSN275201600752P
AHIMA Foundation Members of the LOINC Community who have made donations
Contract FORE-ASPE-2007-5 or became Premium Members
Overview

1. Part 1
1. Emerging perspectives on SDH and informatics: Interoperability as a
key challenge
2. Role of vocabulary standards in SDH: focus on LOINC

2. Part 2
1. Informatics vision: collect once, use many
2. Planning to incorporate standardized SDH data elements in your EHR

📷 Verino77 | cc-by-sa
loinc.org/sdh
Note: these slides (with references) will be available
Mr. V
24 y.o. Hispanic male
Complete C4-5 tetraplegia
ASIA A. Zone of partial preservation to C5.

📷 undpeuropeandcis | cc-by-nc-sa
Injury due to self-inflicted GSW

Self-description:
didn’t have much, drug addict, gang member

Primary caregiver was girlfriend of 3 months

📷 ismetbenismail | cc-by-nc-nd
Needs total assistance with positioning, transfers,
bowel/bladder

Challenging family/caregiver dynamics

Ongoing struggles with depression, self image

Power wheelchair mobility is typically standard, but


serious concerns about safety
📷 undpeuropeandcis | cc-by-nc-sa
Major insight for this
young clinician:
Mr. V’s movement system was not the biggest
factor influencing his health and functioning;
Contextual factors (social and behavioral) were!
World Health Organization. International Classification of Functioning, Disability and Health (ICF).
University of Wisconsin Population Health Institute. County Health Rankings & Roadmaps 2017. www.countyhealthrankings.org. Used with permission.
Why SDH + Health IT?
Inform shared clinical decision making

Incorporate into diagnosis, predictions, and CDSS

Integrate them into care pathways

Expand health system’s ability to tailor to its population needs

Investigate clinical utility of contextual data

Adler NE, Stead WW. Patients in context--EHR capture of social and behavioral determinants of health. N Engl J Med. 2015 Feb 19;372(8):698-701. doi: 10.1056/NEJMp1413945. PubMed PMID: 25693009.

Hossein Estiri, Chirag J Patel, Shawn N Murphy; Informatics can help providers incorporate context into care, JAMIA Open, Volume 1, Issue 1, 1 July 2018, Pages 3–6, https://doi.org/10.1093/jamiaopen/ooy025
IOM Recommends SDH in the EHR
Race or ethnic group
Education Tobacco use
Financial-resource strain Alcohol use
Stress Social connection & isolation
Depression Intimate-partner violence
Physical activity Neighborhood income

Institute of Medicine of the National Academies Committee on the Recommended Social and Behavioral Domains and Measures for Electronic Health Records. Capturing social and behavioral domains in Electronic Health
Records: Phase 2. Washington, DC: The National Academies Press; 2014.
Challenges
Collected, but not available (narrative, paper)

Even if discrete elements, EHRs are not using vocabulary


standards nor including them in structured exchange
mechanisms (HL7v2, C-CDA, FHIR)
Missed opportunities
Limited ability to share across systems

Gold R, Cottrell E, Bunce A, Middendorf M, Hollombe C, Cowburn S, Mahr P, Melgar G. Developing Electronic Health Record (EHR) Strategies Related to Health Center Patients' Social Determinants of Health. J Am Board Fam Med. 2017 Jul-Aug;30(4):428-447. doi: 10.3122/jabfm.2017.04.170046. PubMed PMID: 28720625

Hossein Estiri, Chirag J Patel, Shawn N Murphy; Informatics can help providers incorporate context into care, JAMIA Open, Volume 1, Issue 1, 1 July 2018, Pages 3–6, https://doi.org/10.1093/jamiaopen/ooy025
Interoperability
Why it matters
Connecting Many Data Sources

Social and community determinants


Lifestyle and behavioral
Health history
Patient-generated
EHR/clinical
Genetics
Basic science
Reality:
people move faster and further
than their health information
Interoperability is about
people who want (their
health IT systems) to work
together and understand
each other
📷 scarlatti2004_images | cc-by-sa
Syntax Standards
Messages, Documents, APIs
HL7v2, C-CDA, FHIR

Semantic Standards
Vocabulary/code systems
LOINC, SNOMED CT, RxNorm, HPO, ICD, MONDO
The Superhero Origin Story
Life without LOINC
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
The universal standard for identifying health
measurements, observations, and documents.

LOINC terms have the specificity to distinguish


between clinically important differences.
📷 puuikibeach | cc-by
meerkat meerkat mere cat meerkat

Similar name. Different Meaning.

📷 CaptionTime
72,000+ registered users from 175 countries

Added about 11,500 new users last year


No single vocabulary
standard covers it all
Observables (and collections of them): LOINC
Units of measure: UCUM
Problems, Organisms, Conditions, etc: SNOMED CT, ICD, HPO
Medications: RxNorm, ACT
Reimbursement: National codesets (e.g. CPT)
LOINC is a rich trove of 87,000+ standardized variables
Genetics Lifestyle

21654-9 CFTR gene targeted mutation analysis


41950-7 Number of steps in 24 hour Measured
24475-6 F2 gene c.20210G>A [Presence]
75296-4 Carbohydrate intake 24 hour Estimated
75547-0 Noninvasive prenatal fetal aneuploidy
and microdeletion panel based on Plasma cell- 82289-0 Rating of perceived exertion [Score]
free+WBC DNA by Dosage of chromosome-specific
circulating cell free (ccf) DNA 72166-2 Tobacco smoking status NHIS

82245-2 Chromosome region 22q11.2 deletion in 64098-7 Distance walked in 6 minutes


Amniotic fluid or CVS by FISH

Lab and clinical Environmental

82464-9 Mosquito count [#] in Environmental specimen


4548-4 Hgb A1c MFr Bld 67784-9 Individuals below poverty line Neighborhood

8462-4 Diastolic blood pressure 63736-3 Materials to which you were exposed in your
work or daily life
24725-4 Head CT
63805-6 How long did you handle paints or solvents
57021-8 CBC W Auto Differential panel - Blood yourself?

8633-0 QRS duration 67640-3 My teachers believe that I can do well in my


school work

📷 glasgowamateur | cc-by-sa
📷 unamid-photo | cc-by-nd
{
"resourceType": "Observation",
"id": "body-height",
"meta": {…},
"text": {…},
"status": "final",
"category": [
{

LOINC is designed for


"coding": […],
"text": "Vital Signs"
}
],

Observations (and Orders)


"code": {
"coding": [
{
"system": "http://loinc.org",
"code": "8302-2",
"display": "Body height"

It works equally well in:


}
],
"text": "Body height"

HL7 v2, CDA, FHIR


},
"subject": {
"reference": "Patient/example"
},
"effectiveDateTime": "1999-07-02",
"valueQuantity": {
Or any structure with a two part "value": 66.899999999999991,
"unit": "in",

(observation, observation value) data model


"system": "http://unitsofmeasure.org",
"code": "[in_i]"
}
}
FHIR and LOINC go together
like chips and salsa

danielvreeman.com/fhirdevdays
📷 Marco Verch | cc-by
Codes for individual observations
6690-2 Leukocytes [#/volume] in Blood by Automated
75626-2 count
Total score [AUDIT-C]
29463-7 Body weight
55423-8 Number of steps in unspecified time Pedometer

Codes for collections (panels and documents)


57021-8 CBC W Auto Differential panel - Blood
34565-2 Vital signs, weight and height panel
44249-1 PHQ-9 quick depression assessment panel
36813-4 CT Abdomen and Pelvis W contrast IV
18842-5 Discharge summary
Structured Answer Lists

LOINC Answer Lists LOINC Answers


ID (contains “LL” prefix) ID (contains “LA” prefix)
Can be defined as enumerated or pointers String-based, not truly “concept” based
Contains extra attributes about the package Have some mappings to external codes (e.g. SNOMED CT)
LOINC Distribution
Major releases twice per year
Many release artifacts
Online and desktop browser, API (via FHIR)
Documentation
LOINC Release Distribution
LOINC Table
LOINC Table Core
LOINC Part File
LOINC Answer File
LOINC Panels and Forms File
LOINC Group File
LOINC Document Ontology File
LOINC Multiaxial Hierarchy File
LOINC/IEEE Medical Device Code Mapping File
LOINC/RSNA Radiology Playbook File
LOINC/SNOMED CT Expression Association and Map Sets
Each has a detailed ReadMe and Release Notes
10,000+ assessment terms
and growing…
Social, psychological and behavioral observations - 2015 Edition Geriatric Depression Scale (GDS)
Health IT Certification Criteria set
Humiliation, Afraid, Rape, and Kick questionnaire
Adverse Childhood Events
HIV Signs and Symptoms Checklist
ADAPTABLE patient report item set
howRU
Borderline Symptom List - 23 Item
International Physical Activity Questionnaire
Brief Interview for Mental Status (BIMS)
Living with HIV (LIV-HIV)
Comprehensive Behavior Health Screen
Morse Fall Scale
Confusion Assessment Method (CAM)
My Mood Monitor
Core behavioral health terms (SAMHSA)
Neuro-QOL
Edinburgh Postnatal Depression Scale
PROMIS (e.g. Social Isolation item bank)
Everyday Cognition
PhenX (eg. Social Environments domain)
Exercise Vital Sign
PHQ
FACIT
VR 12 and 36
https://search.loinc.org
https://forms.loinc.org/82152-0/

Example data input widget available using the powerful open-source


LHCForms software from NLM
Our newest release addition:
API via FHIR (beta)
https://loinc.org/fhir
LOINC License
No cost use
Worldwide
In perpetuity
Commercial or noncommercial
Encourages translation
One major prohibition…
CANNOT use any Licensed
Material to develop or
promulgate a different standard
for orders or observations.
What if I can’t find a code for
the variable I’m looking for?
Vocabulary standards grow
because USERS ask
(you don’t need to invent your own)

We want to focus on items


With open IP, adopted by consensus, shared among systems,
driving action
loinc.org/submissions
Collect once. Use many.
Clinical care, public health reporting, quality management,
clinical and epidemiological research, etc…

📷 pagedooley | cc-by
Start capturing
key SDH data

Gold R, Cottrell E, Bunce A, et al. Developing Electronic Health Record (EHR) Strategies Related to Health Center Patients' Social Determinants of Health. J Am Board Fam Med. 2017 Jul-Aug;30(4):428-447. doi: 10.3122/
jabfm.2017.04.170046. PubMed PMID: 28720625.
Leverage
informatics
Could also try NLP vs. discrete data

LHC-Forms. U.S. National Library of Medicine. Available at: https://lhncbc.nlm.nih.gov/project/lhc-forms


"resource": {
"resourceType": "Observation",
...
"code": {
"coding": [
{
"system": "http://loinc.org",
"code": "76542-0"
}
],

Standardize
"text": "Stress means a situation in which a
person feels tense, restless, nervous, or
anxious, or is unable to sleep at night because
his/her mind is troubled all the time. Do you
feel this kind of stress these days?"

at the source.
},
"valueCodeableConcept": {
"coding": [
{
"system": "http://loinc.org",
"code": "LA13914-9",
"display": "Very much"
Let all downstream recipients benefit }
]
}
}
},

LHC-Forms. U.S. National Library of Medicine. Available at: https://lhncbc.nlm.nih.gov/project/lhc-forms


Consider backend
methods for getting
community level data

Hughes LS, Phillips RL Jr, DeVoe JE, Bazemore AW. Community Vital Signs: Taking the Pulse of the Community While Caring for Patients. J Am Board Fam Med. 2016 May-Jun;29(3):419-22. doi: 10.3122/jabfm.2016.03.150172. PubMed PMID: 27170802.

Cantor MN, Chandras R, Pulgarin C. FACETS: using open data to measure community social determinants of health. J Am Med Inform Assoc. 2018 Apr 1;25(4):419-422. doi: 10.1093/jamia/ocx117. PubMed PMID: 29092049.

Bazemore AW, Cottrell EK, Gold R,et al. "Community vital signs": incorporating geocoded social determinants into electronic records to promote patient and population health. J Am Med Inform Assoc. 2016 Mar;23(2):407-12. doi: 10.1093/jamia/ocv088. Epub 2015 Jul 13. PubMed PMID: 26174867.
If this, then that…

If {Stress Score} ≤ 2
&& {Patient preference} != No)

Then
initiate {stress management care plan}
Reporting / Analytics
% Patients for whom social isolation screening performed
62933-7 PhenX - social isolation protocol

77800-1 PROMIS short form - social isolation 4a - version 2.0 raw score

77799-5 PROMIS short form - social isolation 6a - version 2.0 raw score

77798-7 PROMIS short form - social isolation 8a - version 2.0 raw score

77849-8 PROMIS social isolation - version 2.0 Tscore

28212-9 Social isolation [CCC]

76512-3 Social isolation score [NHANES]

The same thing is possible for key metrics on food insecurity,


housing, stress, physical activity, etc…
Same data for…
Informing clinical care
Population health analytics / registry
Electronic quality measure analysis
Observational/epidemiological research
Developing your SDH Health IT Plan
Suggestions and questions to ask yourself
Not all juice is worth
the squeeze
Start here:
professional consensus, saves time, actionable, business value,
people are already doing it!

📷 elwillo | cc-by
Starter questions…
How can I build consensus on selecting a social needs screening/
assessment tool?
Who owns these assessment tools?
Are there intellectual property issues with their use?
Which clinical vocabulary should I use (am I focused on coding
screening, diagnosis, or interventions)?
Should I request new codes?
How do I integrate them into my EHR?
What is the optimal data collection workflow (who, how, when)?
How should I capture patient preferences about SDH
Follow the trailblazers

Social Interventions Research & Evaluation Network (SIREN)

LaForge K, Gold R, Cottrell E, et al. How 6 Organizations Developed Tools and Processes for Social Determinants of Health Screening in Primary Care: An Overview. J Ambul Care Manage. 2018 Jan/Mar;41(1):2-14. doi: 10.1097/JAC.0000000000000221. PubMed PMID: 28990990.

Byhoff E, Cohen AJ, Hamati MC, et al. Screening for Social Determinants of Health in Michigan Health Centers. J Am Board Fam Med. 2017 Jul-Aug;30(4):418-427. doi: 10.3122/jabfm.2017.04.170079. PubMed PMID: 28720624.
https://sirenetwork.ucsf.edu/node/17826
Application questions…
How will we put these data to use (CDS, CQI)?
Which other care team members would benefit (and how might we
share this information with them)?
What resources (e.g. from ONC, SDOs, SIREN, other experts) are
available to help?
How might I participate in the stakeholder community as we
continue learning best practices?
What are future innovation opportunities?
http://www.nachc.org/research-and-data/prapare/toolkit/

https://www.chcs.org/resource/screening-social-determinants-health-populations-complex-needs-implementation-considerations/

https://sirenetwork.ucsf.edu/tools-resources/mmi/compendium-medical-terminology-codes-social-risk-factors
We still have a lot to learn …
How to best incorporate and use community-level data
Tailoring the approach by setting (FQHC, acute, post-acute, etc)
Closing feedback loops (referrals, orders, etc)
Anticipate needing an SDH informatics research agenda
LOINC grows because
USERS ask
SDH requests welcome
Take home lesson:
Once represented in data standards, SDH data
elements can be shared and understood by diverse IT
applications for the benefit of many.

It’s your turn: begin.


Happy LOINCing!
loinc.org/sdh