|Submitted By: Emily Decker / Upstream USA|
|Data Element Information|
|Use Case Description(s)|
|Use Case Description||Lack of access to high-quality family planning services is at the root of continued high rates of mistimed and unwanted (i.e., “unintended”) pregnancies among patients in the U.S. Current research shows that at a state level in the U.S., an estimated 26% - 44% of pregnancies are mistimed or unwanted(1). Unintended pregnancy can perpetuate negative health, economic, and social outcomes, and a lack of contraceptive access is a health equity issue that impacts people across socioeconomic levels, but particularly individuals with low socioeconomic status and younger people (2).
One way in which reproductive health advocates are working to address disparities in access to contraceptive care is through initiatives that integrate patient-centered reproductive health services into primary care settings. The CDC and HHS Office of Population Affairs guidelines for quality family planning service provision advocates for routine screening of pregnancy intention and reproductive life plans to provide a full picture of patient health, wellbeing, and services desired (3). Based on patient response to such screening, prenatal care, contraceptive counseling, and other reproductive health services may be offered by the care team. Some pregnancy intention screening tools have been designed and validated specifically for use in primary care settings and can be integrated into primary care workflows and EHR templates (4-6).
There are numerous state- and federal-level contraceptive access programs operating in the U.S (7-10). A growing number of these programs rely on agency-level data from EHRs to analyze the extent to which participating healthcare agencies may be transforming and implementing best-in-class contraceptive care workflows, including documentation rates for pregnancy intention screening. There are standard LOINC and SNOMEDCT codes that can be used to capture and exchange data related to this screening, and these codes have undergone initial testing in FHIR as part of the HHS Office of Population Affairs effort to modernize Title X Family Planning Program annual reporting(11). Pregnancy intention screening is not yet a data element in USCDI, but could be leveraged by multiple stakeholder groups as soon as FHIR becomes widely implemented.
1) Kost, K., Maddow-Zimmet, I., Little, A. Pregnancies and Pregnancy Desires at the State Level: Estimates for 2017 and Trends Since 2012. Guttmacher Institute Report. Accessed 29 September 2021. URL: https://www.guttmacher.org/report/pregnancy-desires-and-pregnancies-state-level-estimates-2017#
2) Iseyemi, A., Zhao, Q., Peipert, J. Socioeconomic Status as a Risk Factor for Unintended Pregnancy in the Contraceptive CHOICE Project. Obstet Gynecol. 2017 Sep; 130(3):609-615. doi: 10.1097/AOG.0000000000002189
3) Gavin, L., Moskosky, S., Carter, M., et al. Providing Quality Family Planning Services Recommendations of the CDC and the U.S. Office of Population Affairs. MMWR 2014;63(no.4). Accessed 27 September 2021. https://opa.hhs.gov/sites/default/files/2020-10/providing-quality-family-planning-services-2014_1.pdf
4) Bellanca, H., Stranger Hunter, M. ONE KEY QUESTION: Preventive reproductive health is part of high quality primary care. Contraception. 2013 May; 88: 3-6. http://dx.doi.org/10.1016/j.contraception.2013.05.003
5) Stulberg, D., Datta, A., White VanGompel, E, et al. One Key Question and the Desire to Avoid Pregnancy Scale: A comparison of two approaches to asking about pregnancy preferences. Contraception. 2020 December; 101: 231-236. https://doi.org/10.1016/j.contraception.2019.12.010
|Estimated number of stakeholders capturing, accessing using or exchanging||There are numerous stakeholders that could leverage this data element, if included in USCDI. Primary care practices are the intended audience to implement this tool as a way to facilitate practice change and better integrate reproductive health services for their patients. Practices and technical assistance providers could also leverage this data element to monitor and evaluate the extent to which care teams are implementing the screening tool within workflows. Two key initiatives that could utilize these data elements imminently are the federal Title X Family Planning Program and the non-profit technical assistance organization, Upstream USA.
Title X has included pregnancy intention screening in its encounter-level data reporting requirement, and has created both CCD-A and FHIR profiles that include pregnancy intention screening (12-14). Title X aims to collect this data element via interoperability standards by 2025. Title X serves between 1.5-4 million patients of reproductive age per year through approximately 100 grantee organizations.
Upstream USA is a nonprofit working to reduce unintended pregnancy by expanding access to contraception. Upstream currently collects these data elements via two data aggregation vendors that use proprietary software as well as interoperability standards (CCD). Upstream is exploring opportunities to collect these data via FHIR, state HIEs, and other options. Upstream has a goal of partnering agencies that serve one million female patients of reproductive age per year by 2024 (15).
|Link to use case project page||https://opa.hhs.gov/research-evaluation/title-x-services-research/family-planning-annual-report/fpar2 ; https://upstream.org/|
|Maturity of Use and Technical Specifications for Data Element|
|Applicable Standard(s)||Pregnancy Intention Screening Question: Pregnancy intention in the next year - Reported
Example answer list:
Yes, I want to become pregnant; LA26438-4
I'm OK either way; LA26439-2
No, I don't want to become pregnant; LA26440-0
SNOMEDCT response option value set OID: 2.16.840.1.113718.104.22.1686.22
|Additional Specifications||There are technical specifications for FHIR and C-CDA profiles that utilize pregnancy intention screening (LOINC 86645-9).
FHIR Profile: http://build.fhir.org/ig/hspc/ACOG-OPA-IG/output/
The HHS/Office of Population Affairs OPA has created this FHIR standard and implementation guide to collect a set of standardized and agreed upon data elements from all encounters across the 4,000 Title X clinical sites in its project called FPAR 2.0 (https://opa.hhs.gov/research-evaluation/title-x-services-research/family-planning-annual-report/fpar2). Pregnancy intention screening is included in the list of FPAR 2.0 data elements (https://omb.report/icr/202106-0990-002/doc/112357201).
C-CDA technical framework: https://www.ihe.net/uploadedFiles/Documents/QRPH/IHE_QRPH_Suppl_FPv2.pdf
IHE Quality, Research, and Public Health Technical Framework Supplement, Family Planning version 2 (January 7, 2020). Version 1 of this profile was successfully tested by five vendors at the 2015 IHE Connectathon (16, 17).
17) Matney, S., Heale, B., Hasley, S. Lessons Learned in Creating Interoperable Fast Healthcare Interoperability Resources Profiles for Large-Scale Public Health Programs. Appl Clin Inform. December 2018; 10:87-95. https://doi.org/10.1055/s-0038-1677527
|Current Use||In limited use in test environments only|
As noted above, HHS/OPA tested the pregnancy intention screening LOINC and SNOMEDCT codes within testing environments for its FHIR profile and it has built this data element into its encounter-level annual reporting requirement (FPAR 2.0).
Working through its health agency partners, Upstream USA has embedded pregnancy intention screening tools into at least 15 different EHR vendor systems in WA, MA, RI, and NC (internal data). Upstream USA utilizes two healthcare data aggregation and visualization platforms (Azara Healthcare and IMAT) to collect pregnancy intention documentation rates to monitor practice change at its partner health-providing agencies.
Matney Lessons Learned in Creating Interoperable Fast Healthcare.2019.pdf
|Number of organizations/individuals with which this data element has been electronically exchanged||N/A|
|Restrictions on Standardization (e.g. proprietary code)||The LOINC code for screening for pregnancy intention is not proprietary. There are multiple screening tools for assessing patient pregnancy intention. One tool, One Key Question(R), is copyrighted by the organization Power to Decide and needs to be implemented according to their rules and regulations. This application is not advocating for use of any specific pregnancy intention screening tool, rather it is advocating for the general PISQ LOINC code to be adopted by USCDI.|
|Restrictions on Use (e.g. licensing, user fees)||No known restrictions on using this data element.|
|Privacy and Security Concerns||No known privacy and security concerns above and beyond the normal requirements to ensure that data elements are shared only with entities that have active data use agreements and the infrastructure to securely exchange PHI/PII.
If extra caution is desired, an entity may be able to collect whether a response to pregnancy intention screening exists in a patient’s record within a desired timeframe and could decide not to collect the exact patient response to the screening question.
|Estimate of Overall Burden||The burden to implement this data element is related to the level of effort it would take to build out a field in the EHR template and level of effort to train primary care teams to integrate this screening into their workflow. Care teams would also need to be trained on how to provide patient-centered reproductive health services such as contraceptive counseling as a follow-up to the screening. Some EHR vendors have family planning-related templates available to their clients, and such templates may include a pregnancy intention screening tool. Epic, NEXTGEN, and OCHIN Epic may include a field for this data element.
How hard is it to access and provide the data?
If a structured field is available for care teams to input this data element, it would not be difficult to access or send this data.
Is it only available in an outside system, such as a lab reporting system?
This data element is intended to be used in outpatient primary care settings.
Does it need to be calculated by the patient or provider, or can it be automatically retrieved or calculated by the system in a production environment?
This data element can be automatically retrieved via its LOINC code and/or SNOMEDCT response codes.
Does it require significant time on the part of patient or provider to access or record or does it require an interruption in normal workflow to capture?
This data element must be integrated into the primary care and reproductive health encounter workflows. Reproductive health services and contraceptive care are essential to the health and wellbeing of all patients of reproductive age. Such services should be accessible at a patient’s preferred point of care and not only within specialty settings.
Does it require significant developer time to implement in EHR systems?
If there is not yet a field available in the primary care workflow, a developer would need to build it out. In Upstream’s experience, determining where to put the field so that it is accessible to the right care team members at the right time in the workflow takes more time than building out the actual field. The process of identifying the right location and completing the build may take 2-3 months of collaboration.
|ONC Evaluation Details
Each submitted Data Element has been evaluated based on the following 4 criteria. The overall Level classification is a composite of the maturity based on these individual criteria. This information can be used to identify areas that require additional work to raise the overall classification level and consideration for inclusion in future versions of USCDI
|Maturity – Standards/Technical Specifications||Level 1/2 - Must be represented by a vocabulary standard or an element of a published technical specification|
|Maturity - Current Use||Level 1 - Used in limited production environments, 1 or 2 different systems|
|Maturity - Current Exchange||Comment Level - Demonstrates limited exchange with external organizations, on same or different EHR/HIT systems|
|Breadth of Applicability - # Stakeholders Impacted||Level 1 - Used by many, but not most, patients, providers or events requiring its use|