United States Core Data for Interoperability (USCDI)
The United States Core Data for Interoperability (USCDI) is a standardized set of health data classes and constituent data elements for nationwide, interoperable health information exchange. Review the USCDI Fact Sheet to learn more.
A USCDI Data Class is an aggregation of Data Elements by a common theme or use case.
A USCDI Data Element is a piece of data defined in USCDI for access, exchange or use of electronic health information.
USCDI ONC New Data Element & Class (ONDEC) Submission System
USCDI V1
Please reference the USCDI version 1 document to the left for applicable standards versions associated with USCDI v1.
Harmful or undesired physiological responses associated with exposure to a substance.
Health professional’s conclusions and working assumptions that will guide treatment of the patient.
Information on a person who participates or is expected to participate in the care of a patient.
Narrative patient data relevant to the context identified by note types.
Desired state to be achieved by a patient.
Health related matter that is of interest, importance, or worry to someone who may be the patient, patient’s family or patient’s health care provider.
Record of vaccine administration.
Analysis of clinical specimens to obtain information about the health of a patient.
Pharmacologic agents used in the diagnosis, cure, mitigation, treatment, or prevention of disease.
Data used to categorize individuals for identification, records matching, and other purposes.
Activity performed for or on a patient as part of the provision of care.
The metadata, or extra information about data, regarding who created the data and when it was created.
Representing a patient’s smoking behavior.
Unique identifier(s) for a patient's implantable device(s).
Physiologic measurements of a patient that indicate the status of the body’s life sustaining functions.
USCDI V2
The USCDI v2 contains data classes and elements from USCDI v1 and new data classes and elements submitted through the ONDEC system. Please reference the USCDI Version 2 document to the left for applicable vocabulary standards versions associated with USCDI v2 and to the ONC Standards Bulletin 21-3 for more information about the process to develop USCDI v2 and future versions.
Harmful or undesired physiological responses associated with exposure to a substance.
Health professional’s conclusions and working assumptions that will guide treatment of the patient.
Information on a person who participates or is expected to participate in the care of a patient.
Narrative patient data relevant to the context identified by note types.
Non-imaging and non-laboratory tests performed that result in structured or unstructured findings specific to the patient to facilitate the diagnosis and management of conditions.
Tests that result in visual images requiring interpretation by a credentialed professional.
Information related to interactions between healthcare providers and a patient.
Desired state to be achieved by a patient.
Health related matter that is of interest, importance, or worry to someone who may be the patient, patient’s family or patient’s health care provider.
Record of vaccine administration.
Analysis of clinical specimens to obtain information about the health of a patient.
Pharmacologic agents used in the diagnosis, cure, mitigation, treatment, or prevention of disease.
Data used to categorize individuals for identification, records matching, and other purposes.
Condition, diagnosis, or reason for seeking medical attention.
Activity performed for or on a patient as part of the provision of care.
The metadata, or extra information about data, regarding who created the data and when it was created.
Representing a patient’s smoking behavior.
Unique identifier(s) for a patient's implantable device(s).
Physiologic measurements of a patient that indicate the status of the body’s life sustaining functions.
USCDI V3
USCDI v3 contains data classes and elements from USCDI v2 and new data classes and elements submitted through the ONDEC system. Please reference the USCDI Version 3 document to the left for applicable vocabulary standards versions associated with USCDI v3 and to the ONC Standards Bulletin 22-2 for more information about the process to develop USCDI v3 and future versions.
Harmful or undesired physiological responses associated with exposure to a substance.
Health professional’s conclusions and working assumptions that will guide treatment of the patient.
Information on a person who participates or is expected to participate in the care of a patient.
Narrative patient data relevant to the context identified by note types.
Non-imaging and non-laboratory tests performed that result in structured or unstructured findings specific to the patient to facilitate the diagnosis and management of conditions.
Tests that result in visual images requiring interpretation by a credentialed professional.
Information related to interactions between healthcare providers and a patient.
Desired state to be achieved by a patient.
Data related to an individual’s insurance coverage for health care.
Assessments of a health-related matter of interest, importance, or worry to a patient, patient’s family, or patient’s healthcare provider that could identify a need, problem, or condition.
Record of vaccine administration.
Analysis of clinical specimens to obtain information about the health of a patient.
Pharmacologic agents used in the diagnosis, cure, mitigation, treatment, or prevention of disease.
Data used to categorize individuals for identification, records matching, and other purposes.
Condition, diagnosis, or reason for seeking medical attention.
Activity performed for or on a patient as part of the provision of care.
The metadata, or extra information about data, regarding who created the data and when it was created.
Unique identifier(s) for a patient's implantable device(s).
Physiologic measurements of a patient that indicate the status of the body’s life sustaining functions.
USCDI V4
USCDI v4 added 20 data elements and one data class to USCDI v3. Please reference the USCDI v4 standard document and the ONC Standards Bulletin 23-2 for details. To review the prioritization criteria ONC used to select the USCDI v4 data elements, refer to the ONC Standards Bulletin 22-2.
Harmful or undesired physiological responses associated with exposure to a substance.
Information on a person who participates or is expected to participate in the care of a patient.
Narrative patient data relevant to the context identified by note types.
Non-imaging and non-laboratory tests performed that result in structured or unstructured findings specific to the patient to facilitate the diagnosis and management of conditions.
Tests that result in visual images requiring interpretation by a credentialed professional.
Information related to interactions between healthcare providers and a patient.
Physical place of available services or resources.
Desired state to be achieved by a person or a person’s elections to guide care.
Data related to an individual’s insurance coverage for health care.
Assessments of a health-related matter of interest, importance, or worry to a patient, patient’s family, or patient’s healthcare provider that could identify a need, problem, or condition.
Record of vaccine administration.
Analysis of clinical specimens to obtain information about the health of a patient.
An instrument, machine, appliance, implant, software or other article intended to be used for a medical purpose.
Pharmacologic agents used in the diagnosis, cure, mitigation, treatment, or prevention of disease.
Data used to categorize individuals for identification, records matching, and other purposes.
Conclusions and working assumptions that will guide treatment of the patient, and recommendations for future treatment.
Condition, diagnosis, or reason for seeking medical attention.
Activity performed for or on a patient as part of the provision of care.
The metadata, or extra information about data, regarding who created the data and when it was created.
Physiologic measurements of a patient that indicate the status of the body’s life sustaining functions.
Draft USCDI V5
Draft USCDI v5 includes 13 new data elements and two new data classes. Please reference the Draft USCDI v5 standard document and the Standards Bulletin 2024-1 for details. ONC is accepting feedback on the proposed new data elements on the Draft USCDI v5 website until Monday, April 15, 2024 at 11:59 p.m. ET. Feedback will be considered as ONC develops the final version of USCDI v5, which we anticipate publishing in July 2024.
Harmful or undesired physiological responses associated with exposure to a substance.
Information on a person who participates or is expected to participate in the care of a patient.
Narrative patient data relevant to the context identified by note types.
Non-imaging and non-laboratory tests performed that result in structured or unstructured findings specific to the patient to facilitate the diagnosis and management of conditions.
Tests that result in visual images requiring interpretation by a credentialed professional.
Information related to interactions between healthcare providers and a patient.
Physical place of available services or resources.
Desired state to be achieved by a person or a person’s elections to guide care.
Data related to an individual’s insurance coverage for health care.
Assessments of a health-related matter of interest, importance, or worry to a patient, patient’s family, or patient’s healthcare provider that could identify a need, problem, or condition.
Record of vaccine administration.
Analysis of clinical specimens to obtain information about the health of a patient.
An instrument, machine, appliance, implant, software or other article intended to be used for a medical purpose.
Pharmacologic agents used in the diagnosis, cure, mitigation, treatment, or prevention of disease.
Findings or other clinical data collected about a patient during care.
Data used to categorize individuals for identification, records matching, and other purposes.
Conclusions and working assumptions that will guide treatment of the patient, and recommendations for future treatment.
Condition, diagnosis, or reason for seeking medical attention.
Activity performed for or on a patient as part of the provision of care.
The metadata, or extra information about data, regarding who created the data and when it was created.
Physiologic measurements of a patient that indicate the status of the body’s life sustaining functions.
- Represented by a terminology standard or SDO-balloted technical specification or implementation guide.
- Data element is captured, stored, or accessed in multiple production EHRs or other HIT modules from more than one developer.
- Data element is electronically exchanged between more than two production EHRs or other HIT modules of different developers using available interoperability standards.
- Use cases apply to most care settings or specialties.
Level 2
Harmful or undesired physiological responses associated with exposure to a substance.
Material substance originating from a biological entity intended to be transplanted or infused into another (possibly the same) biological entity.
Narrative patient data relevant to the context identified by note types.
Tests that result in visual images requiring interpretation by a credentialed professional.
Physical place of available services or resources.
Data related to an individual’s insurance coverage for health care.
Assessments of a health-related matter of interest, importance, or worry to a patient, patient’s family, or patient’s healthcare provider that could identify a need, problem, or condition.
Record of vaccine administration.
Analysis of clinical specimens to obtain information about the health of a patient.
An instrument, machine, appliance, implant, software or other article intended to be used for a medical purpose.
Pharmacologic agents used in the diagnosis, cure, mitigation, treatment, or prevention of disease.
Findings or other clinical data collected about a patient during care.
Provider-authored directive for the delivery of patient care services.
Data used to categorize individuals for identification, records matching, and other purposes.
Conclusions and working assumptions that will guide treatment of the patient, and recommendations for future treatment.
Condition, diagnosis, or reason for seeking medical attention.
Activity performed for or on a patient as part of the provision of care.
The metadata, or extra information about data, regarding who created the data and when it was created.
Physiologic measurements of a patient that indicate the status of the body’s life sustaining functions.
- Represented by a terminology standard or SDO-balloted technical specification or implementation guide.
- Data element is captured, stored, or accessed in at least one production EHR or HIT module.
- Data element is electronically exchanged between two production EHRs or other HIT modules using available interoperability standards.
- Use cases apply to several care settings or specialties.
Level 1
Material substance originating from a biological entity intended to be transplanted or infused into another (possibly the same) biological entity.
Narrative patient data relevant to the context identified by note types.
Assessments of a health-related matter of interest, importance, or worry to a patient, patient’s family, or patient’s healthcare provider that could identify a need, problem, or condition.
Analysis of clinical specimens to obtain information about the health of a patient.
Pharmacologic agents used in the diagnosis, cure, mitigation, treatment, or prevention of disease.
Data used to categorize individuals for identification, records matching, and other purposes.
The metadata, or extra information about data, regarding who created the data and when it was created.
Physiologic measurements of a patient that indicate the status of the body’s life sustaining functions.
- Not represented by a terminology standard or SDO-balloted technical specification or implementation guide.
- Data element is captured, stored, or accessed in limited settings such as a pilot or proof of concept demonstration.
- Data element is electronically exchanged in limited environments, such as connectathons or pilots.
- Use cases apply to a limited number of care settings or specialties, or data element represents a specialization of other, more general data elements.
Level 0
Material substance originating from a biological entity intended to be transplanted or infused into another (possibly the same) biological entity.
Information on a person who participates or is expected to participate in the care of a patient.
Narrative patient data relevant to the context identified by note types.
Non-imaging and non-laboratory tests performed that result in structured or unstructured findings specific to the patient to facilitate the diagnosis and management of conditions.
Tests that result in visual images requiring interpretation by a credentialed professional.
Information related to interactions between healthcare providers and a patient.
Health data as reflected in a patient's Explanation of Benefits (EOB) statements, typically derived from claims and other administrative data.
Desired state to be achieved by a patient.
Desired state to be achieved by a person or a person’s elections to guide care.
Assessments of a health-related matter of interest, importance, or worry to a patient, patient’s family, or patient’s healthcare provider that could identify a need, problem, or condition.
Record of vaccine administration.
Analysis of clinical specimens to obtain information about the health of a patient.
An instrument, machine, appliance, implant, software or other article intended to be used for a medical purpose.
Pharmacologic agents used in the diagnosis, cure, mitigation, treatment, or prevention of disease.
Findings or other clinical data collected about a patient during care.
Provider-authored directive for the delivery of patient care services.
Data used to categorize individuals for identification, records matching, and other purposes.
Conclusions and working assumptions that will guide treatment of the patient, and recommendations for future treatment.
Condition, diagnosis, or reason for seeking medical attention.
Activity performed for or on a patient as part of the provision of care.
The metadata, or extra information about data, regarding who created the data and when it was created.
Physiologic measurements of a patient that indicate the status of the body’s life sustaining functions.
For data class description and applicable standards supporting data elements, click to view the USCDI Version 1 (July 2020 errata) in PDF format below.
The USCDI ONC New Data Element and Class (ONDEC) Submission System supports a predictable, transparent, and collaborative process, allowing health IT stakeholders to submit new data elements and classes for future versions of USCDI. Click here for more information and to submit new data elements.
The USCDI standard will follow the Standards Version Advancement Process described in the Cures rule to allow health IT developers to update their systems to newer version of USCDI and provide these updates to their customers.
Comment
Submitted by Luis.Vasquez on
Human Rights Campaign Comments on Draft USCDI v5
A .pdf copy of the comments below with inline footnotes is available here (https://drive.google.com/file/d/1whiZLltgklFP1BcyPKIenxeO-SagIJJn/view). Thank you.
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On behalf of the Human Rights Campaign’s more than three million members and supporters nationwide, we write to offer our support for Draft Version 5 of the United States Core Data for Interoperability (“Draft USCDI v5”), which was recently made available for public comment by the Office of the National Coordinator for Health Information Technology (ONC).
The Human Rights Campaign (HRC) is America’s largest civil rights organization working to achieve lesbian, gay, bisexual, transgender, and queer (LGBTQ+) equality. By inspiring and engaging all Americans, HRC strives to end discrimination against LGBTQ+ citizens and realize a nation that achieves fundamental fairness and equality for all. As advocates for LGBTQ+ individuals, we believe that all people—including LGBTQ+ people—deserve to be able to meaningfully access medical care. Likewise, we believe that more reliable, quality data that allow for disaggregation by sexual orientation, gender identity, variations in sex characteristics, race, ethnicity, disability, age, and other key demographic variables are needed so we can better understand and support those living at the intersections of multiple marginalized identities.
Unfortunately, we are currently living through a state of emergency wherein various forms of essential, life-saving care and services for transgender and other LGBTQ+ populations are being increasingly restricted and even criminalized at the state level. We therefore commend ONC for its Draft USCDI v5, which mandates the collection of various data elements that providers must be able to exchange and which we believe will allow LGBTQ+ patients to transfer their care more easily to other providers as necessitated by these shifts in law and policy. Likewise, we believe that data collected consistent with these proposed data elements will generate valuable insights on the health and well-being of LGBTQ+ patients that could in turn inform providers’ efforts to improve equity among those populations. We therefore write to express our support for same being finalized as soon as possible.
Research on LGBTQ+ People and Their Health Outcomes
LGBTQ+ people are a growing population in the United States, living in every state and county and reflecting the breadth of diversity and lived experiences of the communities in which they live. Using data collected through the U.S. Census Bureau’s Household Pulse Survey, we have previously estimated that at least 20 million adults in the U.S. identify as LGBTQ+.[1] Consistent with others’ research, we have also found that younger people are more likely than older people to identify as LGBTQ+.[2] Some researchers estimate that the population of LGBTQ+ adults in the U.S. over the age of 50 will double to over 5 million adults by 2030.[3]
LGBTQ+ people in the U.S. are a demographically diverse population, with the Williams Institute using Gallup Daily Tracking survey data from 2012–2017 to estimate that 58% of LGBT adults identify as female.[4] Likewise, they found that 42% of LGBT adults identify among communities of color, including 1% that identify as American Indian and Alaska Native.[5] The Williams Institute also recently reported on evidence that individuals belonging to certain communities of color appear more likely than their White counterparts to identify as transgender.[6]
Studies have long documented persistent negative health outcomes among LGBTQ+ populations, including disparities in their physical and mental health when compared to their non-LGBTQ+ counterparts.[7] For example, data from the Centers for Disease Control and Prevention’s Behavioral Risk Factor Surveillance System indicate that LGBTQ+ adults, and transgender adults in particular, are significantly more likely than non-LGBTQ+ adults to self-report having at least one disability.[8] LGBTQ+ people of color often fare worse than their White and non-LGBTQ counterparts on several aspects of their health and related measures of well-being.[9] Likewise, the burden of observed negative health outcomes is not evenly distributed among LGBTQ+ communities, with transgender people in particular often reporting poorer health when compared to their cisgender counterparts,[10] and even when compared to cisgender LGB people.[11]
Research has also long indicated that LGBTQ+ populations face heightened challenges with respect to various determinants of their health—such as their being significantly more likely to be living in poverty than their straight and cisgender counterparts.[12] Such experiences can have continued impacts on their health and well-being well into the life course, as reflected by research on LGBTQ+ older adults reporting facing heightened and even unique challenges while aging when compared to their cisgender, heterosexual counterparts.[13] These negative health outcomes observed among LGBTQ+ populations have been linked to a number of factors, including exposure to minority stress due to experiences with stigma and discrimination.[14]
The Current State of Emergency for LGBTQ+ People Supports the Proposed Data Elements
Certain LGBTQ+ subpopulations report distinct needs tied to their health, like gender dysphoria—which is a health condition that disproportionately affects transgender people and is often treated via the provision of gender-affirming care.[15] Not all transgender and other gender-diverse people desiring the broad range of medical and non-medical interventions that comprise gender-affirming care seek it out for a variety of reasons. These often and increasingly include the risk of being denied services and other forms of discrimination that evidence shows can even come at the hands of medical providers.[16] Indeed, research indicates that encountering discrimination while in pursuit of health care has long been an acute fear for and lived experience of transgender and other LGBTQ+ people.[17]
Discrimination against LGBTQ+ communities can take many forms and become insidiously commonplace for those holding multiple marginalized identities experiencing the combined brunt of ableism, racism, colorism, misogyny, and other forms of hate. And unfortunately, such hatred against LGBTQ+ people is currently on the rise. Recently, and for the first time in our nearly half-century history, HRC declared a national state of emergency for LGBTQ+ people in the U.S., following an unprecedented spike in anti-LGBTQ+ legislative assaults, political extremism, and violent attacks nationwide.[18] In many parts of the country, LGBTQ+ people are facing efforts to roll back safeguards against discrimination and harassment alongside bills and administrative actions that would ban their access to critical services like gender-affirming care.
LGBTQ+ people are being increasingly forced to seek services from new and alternative providers due to these bans, and some have even had to move their care to providers in different, less restrictive states. As this becomes a reality for more LGBTQ+ people, it is imperative that their various providers be able to exchange data that will ensure continuity of care and help facilitate improvement of services for these and other marginalized populations. We believe that the data elements proposed as part of the Draft USCDI v5 would allow for same and therefore support ONC finalizing this proposal as soon as possible.
The Proposed Data Elements Would Empower Efforts to Increase Equity for LGBTQ+ Patients
Additionally, we believe that the Draft USCDI v5 data elements would have practical utility by empowering the government and providers’ efforts to advance equity for LGBTQI+ people. Information like a patient’s sexual orientation, gender identity, sex assigned at birth, name used, and pronouns are necessary for providers to be able to truly provide culturally affirming and responsive health care to their patients. We commend the Biden Administration for consistently recognizing this, and for those values being operationalized through ONC’s proposed Draft UCSDI v5.
In June 2022, President Biden issued Executive Order 14075, which requires the creation of an evidence agenda to coordinate a cross-government effort to promote and engage in inclusive and responsible data collection practices on sexual orientation, gender identity, and variations in sex characteristics.[19] In January 2023, the Subcommittee on Sexual Orientation, Gender Identity, and Variations in Sex Characteristics Subcommittee on Equitable Data of the National Science and Technology Council published that Federal Evidence Agenda on LGBTQI+ Equity, which serves as a roadmap to drive federal agencies working to build evidence and leverage data to advance equity for LGBTQI+ people.[20] As summarized in that agenda, the executive order “recognizes that in order to advance equity for LGBTQI+ people, the Federal Government must continue to gather the evidence needed to understand the LGBTQI+ community, the barriers they face, and the policy changes the Federal Government can make to enable their health and well-being.”[21]
As part of these efforts to improve equity, we commend ONC for its inclusion of brand-new data elements on patients’ Pronouns and Name to Use within the Draft USCDI v5. One barrier to continued access to care faced by LGBTQ+ and non-LGBTQ+ people alike is not feeling safe and affirmed by one’s provider, specifically the risk of being referred to in an improper or disrespectful way. Individuals may wish to be referred to using names beyond their legal names for a variety of reasons and deserve to have that wish respected no matter the reason. This is particularly the case for LGBTQ+ patients facing an increasingly intolerant landscape across the country that can often find solace through providers willing to affirm their identities and lived experiences using a specific name or pronoun.
Fortunately, if the Draft USCDI v5 were to be finalized, providers will be able to empower one another to refer to even their newest patients just as they wish to be referred to. This would be the case even for those not already practicing inclusivity in this respect and could help drive providers to implement these and related practices. In this spirit, ONC should consider requiring a banner or pop up of some sort to ensure providers will see this information when opening patient records and therefore minimize the risk of an incorrect name being used to refer to a patient.
The Proposed Data Elements Are Consistent with Best Practices for Data Collection from LGBTQ+ People
Finally, we note that the government has long been collecting information on LGBTQ+ people,[22] with those experiences informing the proposed data elements ONC proposes here. Considering past successes by various federal agencies in this regard, we believe that providers will be able to successfully collect sexual orientation and gender identity-related information from patients themselves following the finalization of the Draft USCDI v5.
For decades, government and other researchers have researched concepts like sexual orientation and gender identity (SOGI), and found that it is more than possible to measure them and obtain quality data; and likewise that respondents do not find this information to be so sensitive that they would not provide it.[23] In a recent report on the collection of SOGI information in the survey context, the Office of Management and Budget (OMB) highlighted guiding principles that have emerged out of that work to support the ongoing collection of SOGI information, including that collected data should have utility, be in support of an agency’s mission, and be done with emphasis on protecting respondents’ confidentiality.[24] Recent recommendations issued by a panel formed by the National Academies of Sciences, Engineering, and Medicine on SOGI measurement in federal surveys and other instruments (the “NASEM Panel”) include well-tested measures for both sexual orientation and gender identity and echo OMB’s recommendations.[25]
Among other recommendations, the NASEM Panel recommends that agencies shift away from collecting information on sex unless information on that construct as a biological variable is necessary.[26] When that type of collection is in fact necessary, the NASEM Panel recommends that such collection “be accompanied by collection of data on gender,”[27] echoing OMB’s recommendation that “respondents should not be asked to provide their sex assigned at birth unless they are also given the opportunity to provide their current gender identity.”[28]We therefore commend the Draft USCDI v5 for being consistent with these recommendations, specifically through its inclusion of a new data element on Sex Parameter for Clinical Use alongside maintained data elements on Sexual Orientation and Gender Identity.
Resources like the Human Rights Campaign Foundation’s annual Healthcare Equality Index have been developed to provide information on and encourage facilities to adopt equitable, knowledgeable, sensitive, and welcoming health care practices free from stigma and discrimination for LGBTQ+ people.[29] This includes resources on the collection of SOGI information that we believe will help providers implement the requirements of the Draft USCDI v5 if they are to be finalized. Indeed, our analysis has found that approximately 90% of participants in our most recent index are already collecting these data, including patients’ sexual orientation, gender identity, name to use, and pronouns.
Finally, however, we note that included among the NASEM Panel’s recommendations is a call for more research on intersex people, or individuals with innate variations in their physical sex characteristics, which are not reflected within the Draft USCDI v5. Intersex people are estimated to make up as many as 1.7% of the global population.[30] Intersex and LGBTQ+ people share common, underserved health and equity needs, as well as challenges and experiences with social stigma, invisibility, and discrimination, that are rooted in restrictive norms and stereotypes regarding gender and sexual orientation. Intersex people also considerably overlap with other LGBTQI+ populations, though they are distinct.[31] For example, intersex populations are distinct from transgender and non-binary populations, but overall are more likely to be transgender or non-binary. Because of these overlapping challenges, we recommend that ONC continue working to ensure providers can be empowered to collect data on the intersex status of their patients alongside their sexual orientation and gender identity.
Thank you for this opportunity to submit comments in support of the health and well-being of LGBTQ+ people.
[1] Human Rights Campaign Found., We Are Here: Understanding The Size of the LGBTQ+ Community (2021), https://hrc-prod-requests.s3-us-west-2.amazonaws.com/We-Are-Here-120821.pdf.
[2] Shoshana K. Goldberg et al., Human Rights Campaign & Bowling Green State Univ., Equality Electorate: The Projected Growth of the LGBTQ+ Voting Bloc in Coming Years (2022), https://hrc-prod-requests.s3-us-west-2.amazonaws.com/LGBTQ-VEP-Oct-2022.pdf. The Williams Institute has previously estimated that at least 2 million youth ages 13–17 identify as LGBT in the U.S., including approximately 300,000 youth who are transgender. See generally id.; Kerith J. Conron, Williams Inst., LGBT Youth Population in the United States (2020), https://williamsinstitute.law.ucla.edu/wp-content/uploads/LGBT-Youth-US-Pop-Sep-2020.pdf.
[3] Soon Kyu Choi & Ilan H. Meyer, Williams Inst., LGBT Aging: A Review Of Research Findings, Needs, And Policy Implications 2 (2016), https://williamsinstitute.law.ucla.edu/wp-content/uploads/LGBT-Aging-Aug-2016.pdf.
[4] LGBT Demographic Data Interactive, Williams Inst. (January 2019), https://williamsinstitute.law.ucla.edu/visualization/lgbt-stats/?topic=LGBT#demographic.
[5] Id.
[6] Jody L. Herman et al., Williams Inst., How Many Adults and Youth Identify as Transgender in the United States? 6 (2022), https://williamsinstitute.law.ucla.edu/wp-content/uploads/Trans-Pop-Update-Jun-2022.pdf;
[7] See, e.g., Kellan E. Baker, Findings From the Behavioral Risk Factor Surveillance System on Health-Related Quality of Life Among US Transgender Adults, 2014-2017, 179 JAMA Internal Medicine 1141 (2019), https://jamanetwork.com/journals/jamainternalmedicine/fullarticle/2730765; Gilbert Gonzales & Carrie Henning-Smith, Health Disparities by Sexual Orientation: Results and Implications from the Behavioral Risk Factor Surveillance System, 42 J. Community Health 1163 (2017), https://pubmed.ncbi.nlm.nih.gov/28466199/.
[8] Human Rights Campaign Found., Understanding Disability in the LGBTQ+ Community, Human Rights Campaign (Aug. 12, 2022), https://www.hrc.org/resources/understanding-disabled-lgbtq-people.
[9] See, e.g., Lauren J.A. Bouton et al., Williams Inst., LGBT Adults Aged 50 and Older in the US During the COVID-19 Pandemic (2023), https://williamsinstitute.law.ucla.edu/publications/older-lgbt-adults-us/; Bianca D.M. Wilson et al., Williams Inst., Racial Differences Among LGBT Adults in the U.S.: LGBT Well-Being at the Intersection of Race (2022), https://williamsinstitute.law.ucla.edu/wp-content/uploads/LGBT-Race-Comparison-Jan-2022.pdf.
[10] See, e.g., Jody L. Herman & Kathryn K. O'Neill, Williams Inst., Well-Being Among Transgender People During the COVID-19 Pandemic (2022), https://williamsinstitute.law.ucla.edu/wp-content/uploads/Trans-Pulse-Toplines-Nov-2022.pdf.
[11] See generally Ilan H. Meyer et al., Williams Inst., LGBTQ People in the US: Select Findings from the Generations and TransPop Studies (2021), https://williamsinstitute.law.ucla.edu/wp-content/uploads/Generations-TransPop-Toplines-Jun-2021.pdf (results of a nationally-representative sample of LGBTQ people).
[12] M. V. Lee Badgett et al., Williams Inst., LGBT Poverty In The United States: A Study Of Differences Between Sexual Orientation and Gender Identity Groups (2019), https://williamsinstitute.law.ucla.edu/wp-content/uploads/National-LGBT-Poverty-Oct-2019.pdf; see also Bianca D.M. Wilson et al., Williams Inst., LGBT Poverty in the United States (2023), https://williamsinstitute.law.ucla.edu/wp-content/uploads/LGBT-Poverty-COVID-Feb-2023.pdf (using data from the Behavioral Risk Factor Surveillance System and the Census Bureau’s Household Pulse Survey to analyze poverty rates during the early days of the COVID-19 pandemic).
[13] See, e.g., Choi & Meyer, supra note 3, at 8 (finding that when compared to their cisgender counterparts, transgender older adults “may seek more frequent and intimate health care due to age related physical conditions and disabilities”).
[14] See Institute of Medicine, The Health Of Lesbian, Gay, Bisexual, And Transgender People: Building A Foundation For Better Understanding 20–21 (2011), https://www.ncbi.nlm.nih.gov/books/NBK64806; see also Logan S. Casey et al., Discrimination in the United States: Experiences of Lesbian, Gay, Bisexual, Transgender, and Queer Americans, 54 Health Servs. Research 1454 (2019), https://pubmed.ncbi.nlm.nih.gov/31659745/.
[15] Kate Cooper et al., The Phenomenology of Gender Dysphoria In Adults: A Systematic Review and Meta-Synthesis, 80 Clinical Psychology Rev. 101875 (2020), https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7441311/.
[16] See, e.g., Lauren S.H. Chong et al., Experiences and Perspectives of Transgender Youths in Accessing Health Care: A Systematic Review, 175 JAMA Pediatrics 1159 (2021), https://jamanetwork.com/journals/jamapediatrics/article-abstract/2782148.
[17] See, e.g., You Don’t Want Second Best” Anti-LGBT Discrimination in US Health Care, Human Rights Watch (July 23, 2018), https://www.hrw.org/report/2018/07/23/you-dont-want-second-best/anti-lgbt-discrimination-us-health-care.
[18] Human Rights Campaign, LGBTQ+ Americans Under Attack: A Report and Reflection On The 2023 State Legislative Session (2023), https://hrc-prod-requests.s3-us-west-2.amazonaws.com/Anti-LGBTQ-Legislation-Impact-Report.pdf.
[19] Exec. Order. 14075, Advancing Equality for Lesbian, Gay, Bisexual, Transgender, Queer, and Intersex Individuals, 87 Fed. Reg. 37,189 (June 15, 2022).
[20] Nat’l Science & Technology Council, Federal Evidence Agenda on LGBTQI+ Equity (2023), https://www.whitehouse.gov/wp-content/uploads/2023/01/Federal-Evidence-Agenda-on-LGBTQI-Equity.pdf.
[21] Id. at 3.
[22] See generally Nat’l Academies Of Sciences, Engineering, & Med., Measuring Sex, Gender Identity, And Sexual Orientation (2022), https://nap.nationalacademies.org/catalog/26424/measuring-sex-gender-identity-and-sexualorientation.
[23] Id. at 52–55, 67.
[24] OMB, Recommendations on the Best Practices for the Collection of Sexual Orientation and Gender Identity Data on Federal Statistical Surveys 3 (2023), https://www.whitehouse.gov/wp-content/uploads/2023/01/SOGI-Best-Practices.pdf.
[25] Nat’l Academies Of Sciences, Engineering, & Med., supra note 22.
[26] Id. at 8.
[27] Id.
[28] OMB, supra note 24, at 4.
[29] HUMAN RIGHTS CAMPAIGN FOUND., HEALTHCARE EQUALITY INDEX 2022 (2022) https://reports.hrc.org/hei-2022.
[30] Melanie Blackless et al., How Sexually Dimorphic Are We? Review And Synthesis, 12 Am. J. Human Biology 151 (2000).
[31] Nat’l Academies Of Sciences, Engineering, & Med, Understanding the Well-Being of LGBTQI+ Populations 26–28 (2020), https://doi.org/10.17226/25877.
Submitted by nachcinformatics on
General Comments on USCDI v5
Dear ONC Officials,
Please accept this letter from the National Association of Community Health Centers, which contains general content about opportunities to support USCDI updates and implementation in health centers.
Thank you for your work,
Julia Skapik, MD, MPH, FAMIA
CMIO, NACHC
Submitted by trujillos@ochin.org on
Comments on USCDI version 5
Please see OCHIN's attached comments.
Submitted by AndreaP on
Orders and Laboratory Comments
Thank you for the opportunity to provide comments on Orders (focusing on laboratory orders) and Laboratory Data (focusing on UDIs) in the attached document. I also support comments made by Regenstrief Institute and the Association for Pathology Laboratories (APHL) with further detail about many laboratory data elements. APHL includes requirements of these elements in accord with other regulations and standards.
Laboratory is a complex and challenging area, including electronically capturing, encoding, storing, exchanging and maintaining the data associated with the complete computerized meaning of tests across the healthcare ecosystem. ONC and the HITAC Committees and Taskforces are applauded for their efforts to advance interoperability in this and other areas of healthcare.
Submitted by iletoj on
OCHIN Comments on Draft USCDI V5
Please see attached document for OCHIN's comments on the Draft USCDI v5. Thank you for your consideration.
Submitted by kl161 on
DUHS Comments on USCDI v5
April 15, 2024
Micky Tripathi, Ph.D., M.P.P., National Coordinator for Health IT
Steven Posnack, M.S., M.H.S., Deputy National Coordinator for Health IT
Office of the National Coordinator for Health Information Technology
Office of the Secretary, United States Department of Health and Human Services
Re: Request for Public Comment, Draft United States Core Data for Interoperability (USCDI) v5
Submitted electronically to https://www.healthit.gov/isa/united-states-core-data-interoperability-uscdi#draft-uscdi-v5
Dear Dr. Tripathi and Mr. Posnack,
Duke University Health System submits the following comment regarding ONC’s Request for Public Comment on the Draft USCDI v5 posted in January, 2024. Duke University Health System is a world-class hospital and health care network supported by outstanding and renowned clinical faculty, nurses and care teams. Duke's services span the full continuum of care, from primary care to medical and surgical specialties and subspecialties, all dedicated to putting our patients at the forefront of everything we do. Our health system includes three hospitals – Duke University Hospital, Duke Regional Hospital and Duke Raleigh Hospital which serves a diverse population providing serving patients from all over the world.
We welcome the opportunity to review and comment on the proposed USCDI v5.
Knowing a patient’s sexual orientation, gender identity, sex assigned at birth, name used, and pronouns, as well as their anatomical inventory, is necessary in order to provide culturally affirming and responsive health care. Everyone deserves to be treated with respect regardless of gender identity and expression, and ensuring that systems and processes treat all genders equally which also means equitable healthcare.
Collecting SOGI data allows us measure disparities and is essential in providing the highest quality of care to our patients.
We are encouraged by the data elements that are included in USCDI v5 and especially like the addition of “name to use.”
Thank you for the opportunity to comment on USCDI v5. We appreciate your support of SOGI data collection, and collection of pronouns and “name to use,” to improve quality of care and to enhance LGBTQIA+ health equity. Should you have any questions, please contact Kirti P Loper, Program Manager, kirti.loper@duke.edu.
Sincerely,
Kirti P Loper
Program Manager, Employee Experience
Duke University Health System
Submitted by minigrrl on
APHL Comments on USCDI Draft V5
The Association of Public Health Laboratories (APHL) thanks you for the opportunity to provide feedback on draft version 5 of the US Core Data for Interoperability (USCDI). Please see attached document.
Submitted by npujara on
Please see the attached…
Please see the attached comments from the American Academy of Pediatrics on the draft USCDI v5.
Submitted by kballantine on
Phreesia's Comments to USCDI V5
April 15, 2024
Micky Tripathi, Ph.D., M.P.P.
Office of the National Coordinator for Health Information Technology (ONC)
U.S. Department of Health and Human Services
330 C Street SW, 7th Floor
Washington, DC 20201
Re: USCDI Version 5
Dear Dr.Tripathi:
Thank you for the opportunity to provide comments and feedback on data elements for inclusion into United States Core Data for Interoperability (USCDI). Phreesia is the trusted leader in patient activation, giving providers, health plans, life sciences companies and other organizations tools to help patients take a more active role in their care. Founded in 2005, Phreesia enabled more than 150 million patient visits in 2023–more than 1 in 10 visits across the U.S.–scale that we believe allows us to make meaningful impact. Offering patient-driven digital solutions for intake, outreach, education and more, Phreesia enhances the patient experience, drives efficiency, and improves healthcare outcomes. As a routine course of business, we integrate with more than 80% of the U.S. electronic health record (EHR) market.
Core to Phreesia is helping patients take a more active role in their care. As such, underpinning our comments is the desire to capture the patient’s voice as an input and source of truth, where appropriate, in their own medical record. Patients can and should be a contributor to their own EHR.
Recommendation 1: Capture Patient Reported Data
Self-reported data is regarded as the gold standard because some data is most accurately captured from the patient directly, including demographics, social drivers of health, symptoms, and outcomes reporting. A recent study highlights the importance of capturing race and ethnicity data specifically from patients given the high rates of missing information, or worse yet, misclassification found in EHRs today.[1] The USCDI does not require that any data be captured from the patient, nor does it designate the patient, or their representative, as the preferred author for select data. We encourage ONC to require that select, relevant data be captured via the patient while designating other, relevant USCDI data as preferred patient authorship. In parallel, we urge that any patient reported data, whether patient authorship is preferred or mandated, be clearly distinguished from other clinical data. Doing so will appropriately amplify the patient’s voice, ensure patients can be partners in healthcare decisions, and active participants in their care.
Phreesia also supports HL7’s ongoing efforts to improve upon the capture of patient reported outcomes. Phreesia remains steadfast in better linking questions and their responses in patient forms consistently, and in a manner that encourages healthcare organizations to include structures that capture trends over time. This is vital to the successful adoption of patient reported outcome performance measures.
Recommendation 2: Promote Inclusivity, Health Equity, and Better Health Outcomes through Pronoun Capture
We support and applaud ONC’s recommendations to include pronouns in patient demographics and information data. Doing so promotes inclusivity, health equity, and improved health outcomes. We recommend that ONC require capture of pronoun data from patients and leverage a standardized, multiple-select, individual pronouns list to enable patients to select, representative pronouns. In the absence of nationally recognized coding systems, we ask ONC to carefully consider the cardinality of pronoun options to ensure representativeness. In addition to inclusive and multi-select selections lists, we recommend that ONC offer manual data entry options, leveraging affirmative statements such as “I identify as _____” or “My pronoun is _____”.
We would be remiss not to highlight the importance of patient reported data via patient-facing apps, like Phreesia, for this very purpose. Capturing pronoun data directly from the patient via a patient facing-app overcomes apprehension and other sensitivities about asking patients for this information in a setting where the patient may feel a lack of privacy, or experience stigma. Phreesia gives patients the ability to comfortably and securely self-identify in a consistent way while affording ease of integration into various systems of records. Given the value of these data for clinical care, we believe every effort should be made to make the process of self-identification safe and seamless for patients.
Recommendation 3: Enhance Medication Data Elements
Phreesia echoes the joint recommendations submitted by the Centers for Disease Control and Prevention (CDC) and the Centers for Medicare and Medicaid Services (CMS) to further differentiate between active, ordered, administered, and prescribed prescription drugs among the universal data elements. Without this distinction, medication management is extraordinarily difficult. We concur with CMS and the CDC that these changes to USCDI will enhance patient safety, quality improvement, and public health and lead to better patient care through appropriate education and engagement. Given Phreesia’s focus on patient reported data, we also recommend capturing patient reported information on adherence and side effects.
We thank ONC for the continued focus on data standardization and interoperability and appreciate the opportunity to comment. Phreesia is committed to collaborating with ONC and other stakeholders on USCDI. We also look forward to continued evolution of the US Core Implementation Guide to not only ensure the USCDI V5 data elements can be effectively and appropriately utilized, but to ensure use cases keep pace with changes in the delivery of, expectations for, and innovations available in, healthcare. Feel free to contact us for more information on these comments or to serve as a resource going forward.
Sincerely,
Kristen Ballantine
Vice President, Public Affairs
[1] A systematic review. Am J Surg. 2023 Oct;226(4):463-470. doi: 10.1016/j.amjsurg.2023.05.011. Epub 2023 May 18. PMID: 37230870
Submitted by StantonVentures on
Comments
Thank you.
Dear USCDI committee.pdf