RSS
FacebookTwitterGoogle+LinkedInShare
Print Friendly

On October 5, 2015, the Centers for Medicare and Medicaid Services (CMS) announced final rules concerning its requirements for Meaningful Use Stage 3 of its health records initiative. These measures have the potential to reduce health disparities among elder lesbian, gay, bisexual, and transgender (transgendered) (LGBT) patients.  The final rules require providers to have the capacity to collect information on sexual orientation and gender identity, among other things.[1] We feel, nonetheless, the required measures do not go far enough.

Many LGBT, and non-gender-conforming Americans forgo necessary health care due to the discrimination that either they or someone they know has experienced in the health care system. One example of LGBT health disparities is a 2014 survey of 6,436 persons who self-identified as transgendered that found that 19% of those sampled reported being refused care due to their transgender or non-gender-conforming status.[2]  When coupled with appropriate gender-sensitive training of health professionals, Electronic Health Records (EHR) can improve the experience of elder LGBT patients and make it more likely that their health needs are met and monitored.  EHR make it more likely that providers have accurate and comprehensive information concerning their patients. When designed well, EHRs can better facilitate understanding and transparency between providers and patients, making the provision of quality care more likely. 

According to the LGBT advocacy organization Services and Advocacy for Gay, Lesbian, Bisexual, and Transgendered Elders (SAGE), the rates of HIV/AIDs among LGBT adults 50 years of age and older increased more than 61% from 2001 to 2007.[3] LGBT elders are clearly at risk of or living with HIV/AIDs and STIs, so it is important for providers to have access to information on sexual behaviors to identify risks, treat certain STIs, and care for patients living with HIV/AIDs.

Just as self-identification can possibly bring benefits for an LGBT patient, it can also bring the risk of  lower quality health care than one would receive had one not self-identified as a sexual minority. The measures announced by CMS in October 2015 do a great deal to address this.

Efforts to Improve LGBT Elders’ Health through Electronic Health Records

The Health Information Technology for Economic and Clinical Health (HITECH) Act of 2009 with its $30 billion investment in health information technology provided a necessary first step in ensuring that patients’ health records could be accessed by and shared among various care settings. The Centers for Medicare & Medicaid Services’ (CMS) Medicare Electronic Health Records Incentive Program also provided incentive payments for certain professionals to make the transition to EHR. [4]

CMS’s Meaningful Use program for EHR continues to be the mechanism through which rewards and penalties are decided.  In order to avoid penalties providers must follow a particular road map for achieving EHR.[5] In an October 2015 final ruling concerning Meaningful Use Stage 3, CMS required that Health IT modules allow “a user to record, change, and access” their gender identity and sexual orientation information.[6] CMS does not require providers to collect this information, but instead merely requires that the provider’s Certified Electronic Health Records Technology have the capacity to account for such demographic information. [7] The final rule also, recognizes the important right of patients to opt out of the sharing of potentially sensitive electronic health records information.[8]  Meaningful Use Stage 3 also recognizes the importance of giving patients who once opted out “the information and resources they would need to opt back in” should they wish to do so.[9]

The decision concerning whether to opt into EHR is made easier by the October 2015 final rule stating that the patient should have the ability to “view online, download, and transmit their health information within 24 hours of its availability to the provider.”[10] The patient or the patient’s representative would have the ability to access this information on personal devices and third-party applications.[11] This information would either be accessible through a personal health record or a patient portal.[12] Additionally, the patient’s health records functionality “must support a patient’s right to have his or her protected health information sent directly to a third party designated by the patient.”[13] These measures greatly increase the likelihood not only that provider-patient/patient representative communication can be improved, but also that the partner of an LGBT patient can participate in health-related decision making. 

Limitations of Current Meaningful Use Measures and Recommendations for Future Ones

Limitations

The final rules concerning the measures used under Meaningful Use Stage 3 advance the potential to record information that could make it easier for providers to better understand their elder LGBT patients and reduce patient trauma.  Nonetheless, limited understanding of these issues among providers, and the lack of political will to address such a new and confusing issue complicate the introduction of gender identity into Electronic Health Records. [14] Findings from a 2014 Human Rights Campaign study highlighted the potential for Meaningful Use Stage 3’s measures to have an impact, as well as its limitations. The 2014 Human Rights Campaign Healthcare Equality Index evaluated over 1,500 facilities across the nation and found that most surveyed facilities had not designed their health records in a way that was inclusive of LGBT patients. Only 15% of surveyed facilities gave patients the option to indicate their sexual orientation, 39% expressed interest in having this option, and another 46% said that such information could only be recorded by means of free-form notation.

Out of the more than 1,500 surveyed facilities, only 13 percent stated that they offered “explicit options for patients to indicate their current gender identity” even if this gender identity differed from the sex that is expressed on a birth certificate, on insurance documents, or on another form of identification. Another 42% of those surveyed expressed interest in having this as an option for transgendered patients. Another 45% indicated that a provider preferred to write down the patient’s gender identity and other information in free-form notes in the patient’s record. Such free-form notations do not, however, ensure that the patient’s identity and/or preferred pronoun will be taken into consideration, nor does it guarantee that this information would be entered into the EHR and then shared among various providers. Turning the Meaningful Use Stage 3 measures into tangible improvements in the health of elder LGBT patients depends on the education and training of providers.

Recommendations

If doctors and hospital administrators learn more about the benefits of introducing gender identity into EHR, they are more likely to support it—this was the conclusion of a 2015 study conducted by authors who looked at the University of California, Davis, Health System’s successful integration of gender into their Electronic Health Records. The authors described their speaking to persons in leadership positions as well as trainings they conducted as being pivotal to the University’s adoption of gender identity into their EHR. The authors’ interviews were with 30 different leaders across various sections of the University’s health system and included lectures concerning the health disparities that LGBT patients face. All of these presentations demonstrated that EHRs that record gender identity can properly identify patients’ health disparities.[15]

Future Meaningful Use measures should require providers to collect data from persons who wish to submit information concerning their sexual orientation and gender identity into their electronic health record. Another way to better ensure that LGBT patients participate is to give all patients the option of entering demographic information into their electronic health record prior to a visit. The UC Davis Health System already “provides a questionnaire that patients can answer in the privacy of their own home that includes questions about sexual orientation and gender identity” and Vanderbilt University conducted in recent years a trial of a similar system and their results showed that “patients are more honest about their personal information when they provided it at home.”[16]

EHR can also make it easier for providers to prevent the spread of HIV in LGBT communities and care for those who are already living with HIV.[17] Allowing patients to anonymously submit answers into the electronic health record regarding sexual history and HIV status can also better guarantee that health professionals address sexual practices and HIV treatments because the patient does not have to respond to such sensitive questions in person.  This method might also ensure greater doctor-patient transparency and could lead to better care.

A 2013 World Professional Association for Transgender Health Electronic Medical Records Working Group highlighted the benefits of having an inventory of transition history and current anatomy in a transgendered patient’s EHR. The Working Group also recommended designing an EHR that would “allow a smooth transition from one listed name, anatomical inventory, and/or sex to another, without affecting the integrity of the remainder of the patient’s record.”[18]

Conclusion

The transformation of EHRs into a tool to increase quality health care and participation by LGBT individuals should be embraced.  When coupled with proper training, electronic health records can help reduce health disparities and advance the availability of consistent, accurate information.

Feb. 25, 2016 – M. Hubbard

 


[1] CMS. “Medicare and Medicaid Programs; Electronic Health Record Incentive Program—Stage 3 and Modifications to Meaningful Use in 2015 through 2017; Final Rule.” 16 October 2015. 80:200. https://www.gpo.gov/fdsys/pkg/FR-2015-10-16/pdf/2015-25595.pdf (site visited February 22, 2016). P. 62858-9.
[2] Jaime M. Grant, Lisa A. Mottet, and Justin Tanis. “Injustice at Every Turn: A Report of the National Transgender Discrimination Survey.” P. 72.
[3] “LGBT Older Adults, HIV and the Affordable Care Act.” Services and Advocacy for Gay, Lesbian, Bisexual, and Transgendered Elders. 07 May 2014. http://www.sageusa.org/files/SAGE%20Issue%20Brief%20-%20HIV%20ACA%20and%20LGBT%20Older%20People%20-%20May%202014.pdf (site visited February 23, 2016). P. 1.
[4] Chun-Ju Hsiao, Ashish K. Jha, Jennifer King, Vaishali Patel, et. al. “Office-Based Physicians Are Responding to Incentives and Assistance by Adopting and Using Electronic Health Records.” Health Affairs. August 2013. 32:8. P. 1470.
[5] For a discussion of these incentives, penalties, waivers for providers, and the implementation road map, see: CMS. “Payment Adjustments & Hardship Exceptions Tipsheet for Eligible Professionals.” November 2015. https://www.cms.gov/Regulations-and-guidance/Legislation/EHRIncentivePrograms/Downloads/PaymentAdj_HardshipExcepTipSheetforEP.pdf (site visited February 24, 2016). CMS. “Electronic Health Records (EHR) Incentive Programs.” 17 February 2016. https://www.cms.gov/Regulations-and-Guidance/Legislation/EHRIncentivePrograms/index.html?redirect=/ehrincentiveprograms (site visited February 24, 2016).
[6] Various hospitals such as Vanderbilt, the Mayo Clinic, and the UC Davis Hospital System were some of the first in the nation to incorporate sexual orientation and gender identity into the demographic information they collected for their electronic health records. For more information see: Joe Alper, Monica N. Feit, and Jon Q. Sanders. “Collecting Sexual Orientation and Gender Identity Data in Electronic Health Records: Workshop Summary.” Institute of Medicine of the National Academies. 2013. P. 29, 33. http://www.ncbi.nlm.nih.gov/books/NBK132859/pdf/Bookshelf_NBK132859.pdf (site visited February 24, 2016).  “LGBT Questions to Become Standardized Demographic Elements in Electronic Health Records.” UC Davis Health System. 13 June 2013. https://www.ucdmc.ucdavis.edu/publish/news/newsroom/7922 (site visited February 24, 2016).
[7] CMS. “Medicare and Medicaid Programs; Electronic Health Record Incentive Program—Stage 3 and Modifications to Meaningful Use in 2015 through 2017; Final Rule.” 16 October 2015. 80:200. https://www.gpo.gov/fdsys/pkg/FR-2015-10-16/pdf/2015-25595.pdf (site visited February 22, 2016). P. 62858-9.
[8] Ibid. P. 62843
[9] Ibid.
[10] Ibid.
[11] Ibid.
[12] Ibid.
[13] CMS. “Medicare and Medicaid Programs; Electronic Health Record Incentive Program—Stage 3 and Modifications to Meaningful Use in 2015 through 2017; Final Rule.” 16 October 2015. 80:200. https://www.gpo.gov/fdsys/pkg/FR-2015-10-16/pdf/2015-25595.pdf (site visited February 22, 2016). P. 62843
[14] Madeline Deutsch and David Buchholz. “Electronic Health Records and Transgendered Patients—Practical Recommendations for the Collection of Gender Identity Data.” Journal of General Internal Medicine. 06 January 2015. P. 843, 846.
[15] Edward Callahan, Nicole Sitkin, Hendry Ton, Suzanne Eidson-Ton, et. al. “Introducing Sexual Orientation and Gender Identity into the Electronic Health Record: One Academic Health Center’s Experience.” Academic Medicine. February 2015. 90:2. P. 154, 156.
[16] Joe Alper, Monica N. Feit, and Jon Q. Sanders. “Collecting Sexual Orientation and Gender Identity Data in Electronic Health Records: Workshop Summary.” P. 14, 46.
[17] Anant Shenoy, Nikolaus Kashey, Patrick Brown, and Neil Kudler. “Better Representing Transgender Patients in the Electronic Health Record.” Journal of Health Care for the Poor and Underserved. 2014. 25. P. 1642.
[18] Madeline B. Deutsch, Jamison Green, JoAnne Keatley, Gal Mayer, et. al. “Electronic Medical Records and the Transgender Patient: Recommendations from the World Professional Association for Transgender Health EMR Working Group.” Journal of the American Medical Informatics Association. 2013. 20. P. 702. 

 

 

Comments are closed.