ACTION ALERT – We need your organizations support – Ensure Collection of Sexual Orientation and Gender Identity in clinical settings

Dear colleagues,

Please consider signing on to this community public comment to the Health Information Technology Policy Committee supporting the inclusion of sexual orientation and gender identity data collection in Stage 3 Meaningful Use Guidelines.

You can sign your organization on at:

http://tfisecure.fenwayhealth.org/limesurvey/index.php?sid=82375&lang=en

Please do so by close of business Thursday January 10^th. We will submit this Friday January 11^th.

The critical importance of this issue is explained in the letter below and attached (footnote citations are in the attached version). This is a moment of opportunity that we don’t want to miss to increase our knowledge of LGBT health and disparities, as a key step toward reducing and eliminating these disparities. During the Stage 2 process there was considerable opposition to asking these questions; we need to push strongly for asking these questions now–just as we have had to do so in the context of adding questions to health and demographic surveys–if this is to become a reality.

Thank you for considering this request. Please forward to any other groups you think might be interested. If you have any questions please call Sean at 617-927-6016.

Best wishes,

Sean Cahill                   Kellan Baker

Fenway Institute           Center for American Progress

******

Department of Health and Human Services

Office of the National Coordinator for Health Information Technology

Farzad Mostashari, M.D., Sc.M., National Coordinator

RE: HIT Policy Committee Request for Comment Regarding the Stage 3 Definition of Meaningful Use of Electronic Health Records

Submitted online at www.regulations.gov on January 14, 2013.

Dear Dr. Mostashari,

We are a coalition of community health centers, public health organizations, groups working on lesbian, gay, bisexual, and transgender (LGBT) health, and HIV/AIDS organizations. We write to comment on the HIT Policy Committee Request for Comment Regarding the Stage 3 Definition of Meaningful Use of Electronic Health Records issued November 7, 2012.

We strongly support the inclusion of sexual orientation and gender identity data collection in Stage 3 Meaningful Use Guidelines. Gathering such demographic information in Electronic Health Records (EHR) is supported by:

• The 2011 Institute of Medicine (IOM) report on LGBT health;
• The 2012 IOM workshop summary report on collecting sexual orientation and gender identity data in EHR;
• Healthy People 2020;
• Section 4302 of the Affordable Care Act; and
• The Joint Commission’s 2010 report, Advancing Effective Communication, Cultural Competence, and Patient- and Family-Centered Care: A Roadmap for Hospitals.

We applaud the draft Stage 3 requirement that there be sexual orientation and gender identity functionality in EHR that is “certified” by the Office of the National Coordinator of Health Information Technology. We are, however, disappointed that the draft Stage 3 Meaningful Use Guidelines propose to retire the existing demographics objective. The collection of a range of demographic data is critical to the success of the Meaningful Use effort, and it is unfeasible to imagine that this vital objective can be considered complete in Stage 2.

Moreover, we are concerned that the draft Stage 3 guidelines do not include sexual orientation and gender identity data collection as requirements for eligible hospitals and professionals. We strongly urge you to reconsider this omission in the interest of improving health care for LGBT people and reducing disparities. Specifically, we recommend that the demographics objective be retained as a core objective in Stage 3, with a slightly higher threshold (e.g., 85 percent) to promote progress past the Stage 2 level, and that it incorporate sexual orientation and gender identity data collection. Doing so acknowledges that demographic information, including sexual orientation and gender identity, is an important part of high-quality, patient-centered care. It will also encourage eligible professionals and hospitals to utilize the LGBT data collection functionality in their EHR systems that the draft Stage 3 guidelines require.

Training and data collection must go hand-in-hand.

As many speakers at the October 2012 IOM workshop on LGBT data collection in EHR systems noted, health professionals and administrative staff need training in LGBT cultural competence to appropriately gather this information from patients. Such training should occur in a broader context of training health professionals and administrative staff in fully incorporating the requirements of Meaningful Use into their daily work. Beginning the process of gathering these data as part of the implementation of Meaningful Use is crucial to the ability of researchers and clinicians to learn more about LGBT health needs and inform training in the future. As part of this effort, we also support a study of the most effective ways to gather sexual orientation and gender identity information in order to optimize the data collection using ways that are most acceptable to consumers.

LGBT data is important in clinical settings.

The importance of sexual orientation and gender identity in clinical settings is significant. The 2011 Institute of Medicine report on LGBT health highlighted substantial health disparities among LGBT people, such as: the prevalence of STIs and HIV (with 64% of new cases of HIV occurring in gay or bisexual men in 2009), and the high rates of behavioral health issues and suicidality, often related to stigma, discrimination, and bullying and hate crimes. Lesbians are more likely than heterosexual and bisexual women to be overweight and obese, increasing their risk for cardiovascular disease, lipid abnormalities, glucose intolerance, and morbidity related to inactivity.[1]

The Massachusetts Behavioral Risk Factor Surveillance Survey found poorer health among bisexual respondents compared with gay, lesbian, and heterosexual respondents, as well as higher rates of mental health issues and smoking.[2]Moreover, there are few providers well versed in the health care needs of transgender patients, creating a barrier to accessing quality care.

Reflecting these disparities, the Institute of Medicine recommends that sexual orientation and gender identity questions be asked in clinical settings and be standardized to allow for the comparison and pooling of data to analyze the unique needs of LGBT people.[3]  Healthy People 2020, which calls for the elimination of LGBT health disparities, also calls for gathering such data by clinicians.[4]Gathering LGBT data in clinical settings is consistent with efforts of the U.S. Department of Health and Human Services to gather health data on LGBT populations as authorized under Section 4302 of the Affordable Care Act.[5]

The recent IOM workshop also noted the benefits of collecting sexual orientation and gender identity data in EHR systems. A provider’s knowledge of a patient’s sexual orientation and gender identity is essential to providing appropriate prevention screening and care.[6]Patients who disclose their sexual orientation identity to health care providers may feel safer discussing their health and risk behaviors as well.[7] Gathering sexual orientation and gender identity data will increase our understanding of LGBT health disparities and how to prevent, screen and detect early health conditions that disproportionately affect LGBT people. Finally, gathering such data in clinical settings will allow providers to better understand and treat their patients, and to compare their patients’ health outcomes with national samples of LGB or LGBT people from national health surveys.[8]

Collecting these data also helps address the fact that LGBT people have long been highly invisible to the health care system, even as they experience disparities in health outcomes and care. Few health providers are trained in LGBT health issues. A recent survey of deans of medical education at medical schools in the US and Canada found that the median time dedicated to teaching LGBT-related content in the entire medical school curriculum was five hours. One third of medical schools reported that zero hours of LGBT content were taught. Only 24% of the medical school deans considered their school’s overall coverage of LGBT material as “good” or “very good” on a 5-category Likert scale.[9]

Collecting sexual orientation and gender identity data in clinical settings is feasible and appropriate.

As documented by the IOM report, many health care organizations are moving forward with gathering sexual orientation and gender identity data in clinical settings to better address the needs of their LGBT patients. We believe that health providers should routinely gather LGBT data just as they gather data on race, ethnicity, and other aspects of identity associated with health and health care access disparities.

For example, Fenway Health in Boston recently evaluated the best way to ask about sexual orientation on its patient registration form. Based on this evaluation, the following question has been added:

Do you think of yourself as:

__ Lesbian, gay or homosexual

__ Straight or heterosexual

__ Bisexual

__ Something else

__ Don’t know

Fenway Health also conducted research on how best to ask a gender identity question on registration forms. Based on research with transgender patients, Fenway Health is now using the following question:

What is your gender?             

• Female
• Male
• Genderqueer or not exclusively male or female

What was your sex at birth?

•  Female
•  Male

Do you identify as transgender or transsexual?

• Yes
• No
• Don’t know

Opponents of asking these questions in clinical settings will raise potential barriers, just as opponents of gathering such data on national health surveys have. Any potential barriers or concerns are surmountable and addressable. One such concern is privacy and confidentiality. Sections 1411(g), 1411(c) (2), and 1414(a) (1) of the 2010 Patient Protection and Affordable Care Act provide privacy and security protections for information used by Health Insurance Exchanges.[10]A rule proposed in July 2011 would mandate “appropriate security and privacy protections” for any “personally identifiable information,” including sensitive health information that is collected and used in the provision of health care.[11]

ONC’s leadership through the Meaningful Use process is a critical component of closing the LGBT health disparities gap.

We urge the Office of the National Coordinator for Health Information Technology to demonstrate the visionary leadership required to institutionalize the routine gathering of sexual orientation and gender identity data in clinical settings. We know how to ask these questions and how to ensure that most patients answer them honestly and without fear or stigma. We are happy to answer any questions you may have, and we look forward to working with you to improve health care data management in the United States as a key step toward reducing and eventually eliminating LGBT health disparities. (Contact: Sean Cahill at the Fenway Institute, scahill@fenwayhealth.org, or Kellan Baker at the Center for American Progress, kbaker@americanprogress.org.)

Sincerely,

Fenway Health

Center for American Progress

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