Data Element
Self-Identified Need for Contraception (SINC)
Description

Self-Identified Need for Contraception screening tool for primary care settings.
Submitted By: Dr. Christine Dehlendorf / Person-Centered Reproductive Health Program, Family and Community Medicine, University of California, San Francisco
Data Element Information
Use Case Description(s)
Use Case Description Providing individuals at risk of undesired pregnancy access to contraceptive services is an essential component of a quality health care system that optimizes reproductive health and wellness. High rates of unintended pregnancy in the United States indicate that many individuals are not having their needs for pregnancy prevention met. Analyses of the National Survey of Family Growth find that only 46% of women at risk of unintended pregnancy receive contraceptive services in a year, with disparities by both race/ethnicity and age (with younger patients being less likely to receive contraceptive services (1). Improving delivery of contraceptive care to those in need has the potential to improve reproductive outcomes overall and mitigate health disparities. One essential aspect of this care delivery is identifying those in need of contraceptive services. This identification can be facilitated by standardized data elements designed to determine who is in need of services and feed into patient-centered workflows to provide appropriate services.

In considering the use of standardized data elements, it is essential to recognize that the provision of contraception care services has a fraught history in the United States, marked by targeted marketing of birth control to and forced sterilization of Black and Indigenous people of color, as well as poor people and people with disabilities, motivated by the desire to curb the reproduction of these groups (2). Asking about contraception and pregnancy prevention in the healthcare setting carries the weight of this history. It is therefore critical that screening for contraceptive need is done in a manner that does not inadvertently reproduce harm by communicating a sense of expectation or pressure to use pregnancy prevention methods.

Documenting those in need of contraceptive services has the additional benefit of allowing for monitoring of provision on contraceptive care to the population of interest between programs and over time. There are numerous state- and federal-level contraceptive access programs currently operating in the U.S. These programs rely on agency-level data from EHRs to analyze the extent to which participating healthcare agencies are meeting patients’ reproductive health needs and implementing best-in-class contraceptive care workflows.

The Person-Centered Reproductive Health Program at UCSF has developed, in consultation with race equity and Reproductive Justice leaders, a screening tool to determine whether a patient would like contraceptive care services in that day’s visit. This tool, the self-identified need for contraceptive care, consists of a primary question, “Do you want to talk about contraception or pregnancy prevention during your visit today,” and follow-up prompt (3). This screening tool has been embedded and tested in EHRs and has a LOINC code, yet it is not included in USCDI.

The SINC screening question is as follows:
We ask everyone about their reproductive health needs. Do you want to talk about contraception or pregnancy prevention during your visit today?
If yes: Mark yes and ensure appropriate counseling is provided
If no: Clarification Prompt: There are a lot of reasons why a person wouldn't want to talk about this, and you don't have to share anything you don't want to. Do any of these apply to you? (mark all that apply)
I’m here for something else
This question does not apply to me
I prefer not to answer
I am already using contraception (and what)
I am unsure or don’t want to use contraception
I am hoping to become pregnant in the near future

This question is intended to be added to the electronic health record and integrated as part of routine care and screening. Throughout the development of this question and the response options, attention was paid to ensure that people’s own preferences and needs related to reproduction are recognized and respected. For example, by initiating the screening with a reference to the standardized nature of the question, we sought to prevent any perceived, or real, targeting of the reproductive choices of certain individuals or individuals from certain groups. We also carefully considered the ordering of the answer options so as not to infer that the most acceptable response was “I am already using contraception”. Implementation of this screening is designed to support reproductive autonomy and patient privacy, and decrease inequities in the provision of contraception services.
In addition to supporting patient-centered workflows for contraceptive provision, the question detailed above is designed to be used to define the denominator for an electronic Clinical Quality Measure of contraceptive provision and use, with the goal of identifying the extent to which facilities and clinics are meeting the needs for contraceptive services of their patient population in need of these services.
Guidance for Implementing the SINC:
This question can be asked either by a provider OR by the person who screens patients before seeing the provider (medical assistant, health educator, nurse, etc.) to assess for desired services.
Screen patients ages 18-44 once a year.

There may be patients for whom the question is not relevant (e.g. they get their care elsewhere, they have had a hysterectomy, they only have sex with individuals who do not produce sperm, or they simply do not want to be asked). For these patients, it is important to ensure that this information is noted in a way that ensures that they are not asked the question unnecessarily.
For individuals who indicate they do not wish to discuss contraception because they are at the clinic for another reason, clinics can develop workflows to facilitate this question being asked at a follow-up visit.

1) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5879726/
2) These dynamics have been extensively documented by many authors, including Dorothy Roberts’ Killing the Black Body and Harriet Washington’s Medical Apartheid. For contemporary examples of contraceptive coercion, forced sterilization, and implicit bias in contraceptive counseling, see authors Anu Gomez, A.M. Stern, and Christine Dehlendorf
3) https://pcrhp.ucsf.edu/sites/g/files/tkssra4126/f/Implementation%20Guidance_5.7.21.pdf
Estimate the breadth of applicability of the use case(s) for this data element SINC is intended for use in primary care settings to improve access to patient-centered contraceptive care. Entities interested in collecting or exchanging data related to contraceptive care quality improvement are stakeholders. Currently, there are a number of family planning and reproductive health quality improvement initiatives and programs that could leverage these data elements, if included in USCDI. Two key initiatives that could utilize these data elements imminently are the federal Title X Family Planning Program and Upstream USA.

Title X has included SINC as an optional data element in its encounter-level data reporting requirement (1) . 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 (2).

UCSF is also working with the National Association of Community Health Centers to implement SINC in community health centers across the country. As Community Health Centers are the primary medical home for over 30 million people in more than 13,000 rural and urban communities, there is the potential for widespread adoption.

1) https://omb.report/icr/202106-0990-002/doc/112357201
2) https://upstream.org/about/
Link to use case project page https://opa.hhs.gov/research-evaluation/title-x-services-research/family-planning-annual-report/fpar2
Healthcare Aims
  • Improving patient experience of care (quality and/or satisfaction)
  • Improving the health of populations
  • Improving provider experience of care
Maturity of Use and Technical Specifications for Data Element
Applicable Standard(s) Self-Identified Need for Contraception (SINC) LOINC: 98076-3
Example answer list:
Yes (qualifier value) LA33-6
No - I do not want to talk about contraception today because I am here for something else; LA32389-1
No - This question does not apply to me/I prefer not to answer; LA32390-9
No - I am already using contraception; LA32393-3
No - I am unsure or don't want to use contraception; LA32391-7
No - I am hoping to become pregnant in the near future; LA32392-5

https://loinc.org/98076-3/
Additional Specifications N/A
Current Use In limited use in test environments only
Supporting Artifacts SINC does not yet have technical specifications, other than the above referenced implementation guide. SINC is also included in FPAR 2.0 as an optional data element. The eCQM that uses SINC to define the denominator will be submitted for endorsement by the National Quality Forum in early 2022.
Extent of exchange N/A
Potential Challenges
Restrictions on Standardization (e.g. proprietary code) The SINC is stewarded by UCSF and is not proprietary (https://pcrhp.ucsf.edu/sinc ).
Restrictions on Use (e.g. licensing, user fees) No known restrictions on using SINC.
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.
Estimate of Overall Burden UCSF has worked with eight clinics using three different EHR systems (Epic, OCHIN Epic, and AthenaOne). In these instances, changes were able to be implemented in about 3 months in collaboration with clinical and vendor teams. The implementation burden depends on the change process for the EHR at the system. The change process can involve many committee meetings and months. Most systems, from our experience, are able to implement the EHR template changes in about 3 months.

How hard is it to access and provide the data?
The primary burden of implementing SINC depends on the change processes involved to embed the SINC into the relevant EHR template so that care teams can use the data element. SINC must also become part of the regular workflow in primary care for patients of reproductive age.

Is it only available in an outside system, such as a lab reporting system?
The data element would reside within the clinical agency’s EHR system server.

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?
The data element could be automatically retrieved and summarized within the production environment or relevant external stakeholder that receives the data.

Does it require significant time on the part of patient or provider to access or record or does it require an interuption in normal workflow to capture?
UCSF advocates for SINC to be included as part of a patient-centered primary care workflow, enhancing access to reproductive health services for those who need it. Therefore, the added time burden will be offset by enhanced quality of care. The question is estimated to require a minute or less to implement.

Does it require significant developer time to implement in EHR systems?
See above re: primary burden.
ONC Evaluation Details
Each submitted Data Element has been evaluated based on the following 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
Criterion #1
Maturity - Current Standards		 Level 2 - Data element is represented by a terminology standard or SDO-balloted technical specification or implementation guide.
Criterion #2
Maturity - Current Use 		Level 0 - Data element is captured, stored, or accessed in limited settings such as a pilot or proof of concept demonstration.
Criterion #3
Maturity - Current Exchange		 Level 0 - Data element is electronically exchanged in limited environments, such as connectathons or pilots.
Criterion #4
Use Case(s) - Breadth of Applicability		 Level 1 - Use cases apply to several care settings or specialties.

Comment

Submitted by RUy on

NACHC in support of SINC

NACHC supports previous comments by CECA, Upstream USA, UCSF, NFPRHA and others on the reevaluation and inclusion of this data element and others. 

Please see attached letter including more detailed comment on this element and others.

2024-04-15 NACHC USCDIv5 Draft Letter_3.pdf

Submitted by Frances Collazo on

Letter in support of adding SINC to USCDI

 

April 15th, 2024

 

VIA ELECTRONIC TRANSMISSION

 

Micky Tripathi, Ph.D., M.P.P.

Office of the National Coordinator for Health Information Technology 

U.S. Department of Health and Human Services

330 C St SW Floor 7

Washington, DC 20201

 

RE: In Support of the University of California, San Francisco (UCSF) Person-Centered Reproductive Health Program’s Submission to Add the Self-Identified Need for Contraception (SINC) Data Element to the US Core Data for Interoperability (USCDI)

Dear National Coordinator Tripathi:

Planned Parenthood Federation of America (PPFA) is pleased to submit this letter expressing its support for the University of California, San Francisco (UCSF) Person Centered Reproductive Health Program’s submission to add the Self-Identified Need for Contraception (SINC) data element into the US Core Data for Interoperability (USCDI) set. As a trusted advocate for sexual and reproductive health (SRH) and national representative of Planned Parenthood health centers, PPFA appreciates the opportunity to weigh in on policy proposals that impact the communities we serve across the country. PPFA is also deeply concerned about issues impacting people’s privacy, such as interoperability.

PPFA is a 501(c)(3) charitable organization that supports the independently incorporated Planned Parenthood affiliate health centers across the United States. Planned Parenthood health centers are the nation’s most trusted, nonprofit source of primary and preventive care for people of all genders, and they are also the nation’s largest sex educator and provider of information on healthy relationships. PPFA and its affiliated health center providers are experts on meeting people where they are through innovative apps, chat programs, and culturally responsive care for young people, LGBTQ+ patients, and patients of color.

Each year, Planned Parenthood health centers provide affordable birth control, lifesaving cancer screenings, testing and treatment for sexually transmitted infections (STIs), abortion, and other essential care to 2.1 million patients annually, and ensure that all people have accurate information about sexual and reproductive health. Notably, one in three women in the United States has visited a Planned Parenthood health center. The majority (nearly 70%) of Planned Parenthood patients have incomes at or below 150 percent of the Federal Poverty Level (FPL).

Planned Parenthood health centers utilize electronic medical records, billing systems, and interact with Electronic Health Records (EHRs) as a critical part of health care infrastructure. Therefore, our health centers play a vital role in health data collection. At the same time, Planned Parenthood health centers recognize the trust that our patients place in us to keep their health information safe, secure, and private. Furthermore, because Planned Parenthood health centers provide health care, education and information for lesbian, gay, bisexual, transgender, queer and gender-nonconforming people, women, communities of color, immigrants, people with chronic illnesses and disabilities, and others who frequently experience systemic oppression and barriers to care, we are acutely aware of the racism, homophobia, xenophobia, transphobia, and sexism that is rooted in our society, and how these systems of oppression impact people’s health. Thus, we are providing feedback to the USCDI+ datasets released by ONC because we recognize the need for a balance between equitable collection of health information, the necessity to report cases to public health agencies and protecting individual patients’ privacy. 

Moreover, PPFA is aware that sharing the health information related to a patient’s sexual and reproductive health care could lead to substantial harm, including criminalization. If patients do not trust that providers will respect and protect the integrity of their health information, there cannot be an interoperable, reliable health care system. 

  1. The USCF proposed inclusion of the SINC data element into USCDI centers patient autonomy in the sexual and reproductive health care setting.

Effectively providing contraceptive services to those who may be most likely to experience unintended pregnancy is crucial for a comprehensive health care system that advances sexual and reproductive health. Given the long history of reproductive coercion and oppression in the United States, centering patient autonomy is critical to the reproductive health needs assessment. Research has shown that patients prefer a service-needs approach when asked about their reproductive health needs, as this area of health care can be sensitive and highly stigmatized, especially within certain communities. SINC is a standardized screening tool which can help providers center their patients’ reproductive health preferences and needs, using a service-needs screening question. SINC is unique in its approach, as other recognized contraceptive care screening questions counsel patients through a pregnancy-intention frame, which makes assumptions about a patient’s desire for contraceptive use based on their feelings around becoming pregnant within a calendar year.

SINC’s design allows for integration into a range of patient-centered clinical workflows, which enables use by all members of the health care team and during any visit, whether in person or virtual. This comprehensive approach to implementation means broader and more consistent uptake of the reproductive needs assessment, which ensures contraceptive goals are addressed for more patients.  

By integrating the SINC data element into the USCDI — which defines what data elements are available for interoperable health information exchange through certified electronic health records (EHRs) — and systemizing how patients’ desire for contraceptive services is captured in clinical settings, the United States can make a significant step in advancing health equity by enhancing the delivery of contraceptive care and other reproductive needs for everyone who needs it.

  1. People who obtain, provide, or facilitate sexual and reproductive health services are under increasing threat and ONC should ensure the patients have the ability to protect their data

Generally, PPFA supports expanding health data collection and exchanges for the benefit of patients, its communities, and for public health. However, we are always careful in considering interoperability expansions, since the current hostile political and legal landscape for reproductive care represents a data privacy risk to our patients’ safety, as well as the safety of their families and providers. People seeking sensitive services like those that Planned Parenthood health centers provide, such as SRH care or behavioral health care, have a heightened need for confidentiality. It is imperative that patients and providers have the ability to protect health care data related to these services and protect patients from harms caused by state or individual actors.

The Dobbs v. Jackson Women’s Health Organization Supreme Court decision led to numerous states prohibiting or severely restricting access to abortion. The abortion bans that have been enacted have caused access to contraceptive care to become increasingly threatened. The consequences of criminalizing sexual and reproductive health care can include investigations, arrests, civil penalties, loss of children and reputational harm. In particular, individuals' access to contraceptive options like intrauterine devices (IUDs) and emergency contraceptive pills are often mistakenly alleged to cause abortions. This misconception, along with the definitions utilized in abortion bans enacted by certain states, could potentially serve as means to restrict access to contraception. For example, definitions in abortion bans that establish the existence of a pregnancy from the moment of fertilization could be construed to mean that preventing the implantation of a fertilized egg equals terminating a pregnancy – therefore potentially banning certain types of contraception.

While interoperability facilitates record sharing for patient-centered care, it also increases opportunities for utilizing a patient’s pregnancy data against them, including a patient’s contraceptive data. Since SINC collects data of the type of contraception a patient currently has or wants, the out-of-state sharing of SINC health information to an abortion-restricted state could potentially allow a patient or a provider to unjustly suffer criminalization for seeking essential health care where it was lawful to do so. To mitigate this harm, ONC should make sure that the patient has the ability to request a restriction on sharing their SINC data. 

  1. If integrated in the USCDI, the collected and exchanged SINC information must comply with HIPAA privacy rule.

Patients seeking lawful sexual and reproductive health care, including contraception and abortion services, should not fear legal repercussions for accessing that care. Therefore, collected SINC data must allow the patient to restrict its sharing as well as comply with the HIPAA privacy rule. Currently, under the HIPAA privacy rule individuals have the right to request restrictions on how a covered entity will use and disclose their PHI; although, in most cases, covered entities are not required to agree with the requested restrictions. 

Following the Dobbs decision, President Biden directed HHS through Executive Order 14076, to “consider ways to strengthen the protection of sensitive information related to reproductive health care services and bolster patient-provider confidentiality.” Therefore, the request to ONC for making sure that collected SINC data complies with the HIPAA privacy rule is consistent with the actions of the Biden-Harris administration seeking to bolster the privacy of patients’ reproductive health data in response to the post-Dobbs increasing hostile sexual and reproductive health landscape.

*********************************************

The hostile sexual and reproductive landscape and the ongoing changes in health information sharing necessitate both improving patients’ access to quality SRH care and protect their privacy. PPFA urges ONC to include SINC data element in the USCDI system for bolstering patient-centered care while ensuring the information can be protected through a patient restricted request as well as being accessed in compliance with the HIPAA privacy rule.

PPFA is grateful for the opportunity to share its perspective on SINC data element inclusion in the USCDI system as a provider of sensitive health care services. We are available to support this initiative as needed as ONC moves toward finalizing this and other system innovations. Please do not hesitate to reach out to Frances Collazo, Director, Legal Policy Strategy and Research, at frances.collazo@ppfa.org or 929-388-9448 for additional information.

Respectfully,

 

Laurel Sakai 

National Director, Public Policy

Planned Parenthood Federation of America 

1110 Vermont Avenue NW, Suite 300 

Washington, DC 20005

PPFA SINC USCDI letter 4.15.2024_0.pdf

Submitted by edecker on

Support for re-evaluating SINC for level

Upstream USA respectfully requests that this data element be re-evaluated for level. The information presented in the original data element application and comment dated 12/20/21 still hold, and the need for it to become fully adopted in USCDI is urgent. Title X grantee reporting continues to capture self-identified need for contraception (SINC) screening. Title X grantees are now meaningfully reporting encounter-level data including SINC. 

Upstream USA continues to implement reproductive health needs screening approaches, including SINC, with healthcare partners as one way to begin a contraceptive care workflow. We have embedded SINC into at least 7 different EHR vendor systems across the U.S. Vendor instances include Epic, OCHIN Epic, NextGen, athenahealth, Intergy, Medent, and eClinicalWorks. SINC is exchanged between these systems and Upstream’s data aggregation and visualization platform vendor, Azara Healthcare. 

Submitted by CECA on

CECA supports inclusion of SINC in USCDI

The Coalition to Expand Contraceptive Access (CECA) supports the inclusion of "Self-Identified Need for Contraception (SINC)" as a required data element for interoperability across electronic health records systems for USCDI. 

There is a critical need for expanded standardized data elements for the documentation of reproductive health care. SINC is a standardized screening tool which can help providers center their patients’ reproductive health preferences and needs, using a service-needs screening question. SINC is unique in its approach, as other recognized contraceptive care screening questions counsel patients through a pregnancy-intention frame, which makes assumptions about a patient’s desire for contraceptive use based on their feelings around becoming pregnant within a calendar year. 

SINC centers patient autonomy by giving patients the space to identify their needs, rather than making assumptions and directing them towards a certain outcome. Centering patient autonomy in the reproductive healthcare space is critical, as there is a long history of reproductive coercion and oppression in the United States. 

Submitted by RUy on

Reaffirming support for reproductive health data elements

The National Association of Community Health Centers (NACHC) remains steadfast in its commitment to advocating for and prioritizing Women's Health, Reproductive Health, and Social Determinants of Health (SDOH) data elements. Recognizing the critical role that these factors play in shaping the clinical outcomes of community health center patients, NACHC continues to emphasize the need for comprehensive, accurate, and interoperable data. By reaffirming our support for these essential elements, we aim to drive informed decision-making, policy development, and targeted interventions that address the root causes of health disparities. This underscores NACHC's belief in the transformative potential of this data element in building healthier, more equitable communities.

See attached letter of support containing comments on data elements across USCDI submissions and versions.

2023-09-20 NACHC USCDIv5 Letter of Support_10.pdf

Submitted by RUy on

NACHC supports the inclusion of SINC

NACHC supports the inclusion of "Self-Identified Need for Contraception (SINC)" as a required data element for interoperability across electronic health records systems for USCDI. 

LOINC code 98076-3, which represents "Self-Identified Need for Contraception (SINC)", can be used to document whether a patient has indicated a need for contraception during a clinical encounter. By standardizing the use of this code across electronic health records systems, healthcare providers can better identify and address unmet contraceptive needs, ultimately improving reproductive health outcomes for patients.

Incorporating SINC as a required data element can also help to address healthcare disparities, particularly for marginalized communities who may face barriers in accessing contraception. By capturing this information and ensuring its interoperability, healthcare providers can better tailor their care to the individual needs of their patients.

Overall, the inclusion of "Self-Identified Need for Contraception (SINC)" as a required data element with the use of LOINC code 98076-3 would represent an important step towards improving reproductive healthcare and advancing healthcare equity. 

Log in or register to post comments