| Submitted By: Sean Cahill / Fenway Health | |
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| Data Element Information | |
| Use Case Description(s) | |
| Use Case Description | Adding a sex characteristics question allows for measurement of intersex status, or differences in sexual development. According to InterACT, about 1.7% of people are born intersex. Some 1 in 2,000 babies (0.05% of humans) are born with genital differences that a doctor might suggest changing with unnecessary surgery. (These estimates are based on work by Dr. Anne Fausto-Sterling, who reviewed medical literature from 1955-1998; Sexing the Body: Gender Politics and the Construction of Sexuality, 2000). Intersex people may have differences in genitalia, gonads, sex chromosomes, and reproductive ducts. The Fenway Guide to Lesbian, Gay, Bisexual, and Transgender Health (American College of Physicians, 2015) has a helpful chapter on medical care of intersex patients. Key health care issues affecting intersex individuals are: sexual function and satisfaction; fertility; therapy to support psychosocial adjustment; and sensitive, affirming, and culturally competent care. Adult intersex individuals grew up when standard medical practice was to subject intersex children to irreversible genital surgeries without their consent or full knowledge. Intersex advocates for decades have decried these surgeries as unethical (Ittelson A, Fraser S, and Levasseur MD (2018). Providing Ethical and Compassionate Health Care to Intersex Patients: Intersex-Affirming Hospital Policies. InterACT and Lambda Legal). Intersex people experience significant medical mistrust, and may experience health disparities (Organisation Intersex International Europe. Covid-19 Survey Report. Published December 9, 2020. Accessed December 17, 2020. https://oiieurope.org/covid-19-survey-report/). Variations in Sex Characteristics data can be used to improve quality of care for intersex patients. They can be used to manage population health, to ensure for example that intersex patients are accessing care, preventive screenings, at levels consistent with patients who are not intersex. Given negative experiences with the health care system and high levels of medical mistrust, this is important for health equity. |
| Estimated number of stakeholders capturing, accessing using or exchanging | This could be either Level 1 – elements pertain to many, but not most of patients, providers or requestors or Level 2 – elements pertain to most or all patients, providers or requestors. The intersex population is relatively small, but many if not most health care providers will have intersex patients. The number of stakeholders who would capture, access, use or exchange this data element is quite large. |
| Link to use case project page | https://interactadvocates.org/intersex-data-collection/ |
| Healthcare Aims |
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| Maturity of Use and Technical Specifications for Data Element | |
| Applicable Standard(s) | LOINC has an intersex response option, 99502-7, for Recorded sex or gender. LOINC has an intersex response option. We do not endorse the way LOINC conceptualizes intersex (as corresponding to an X response to a sex or gender question). https://loinc.org/loinc/99502-7/ |
| Additional Specifications | N/A |
| Current Use | In limited use in production environments |
| Number of organizations/individuals with which this data element has been electronically exchanged | 5 or more. This data element has been tested at scale between multiple different production environments to support the majority of anticipated stakeholders. |
| Potential Challenges | |
| Restrictions on Standardization (e.g. proprietary code) | None |
| Restrictions on Use (e.g. licensing, user fees) | None |
| Privacy and Security Concerns | Any such concerns would be similar to those related to sexual orientation, gender identity, and other demographic elements. |
| Estimate of Overall Burden | Since this measure would be self-reported by the patient and doesn't involve any physical measurements or numerical-value response options, the burden would be similarly minimal to that for other comparable patient-reported items, including sexual orientation, gender identity, and other demographics. |
| 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 |
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| 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 | Level 1 - Demonstrates exchange between 2 or 3 organizations with different EHR/HIT systems |
| Breadth of Applicability - # Stakeholders Impacted | Level 1 - Used by many, but not most, patients, providers or events requiring its use |
| Evaluation Comment | Thank you for your submission. The rationale for Level 1: data element is not yet exchanged or supported as desired by LOINC. |
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