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3 Federal Perspective on the Use of Electronic Health Records to Collect Sexual Orientation 1 and Gender Identity Data Key Points Raised by the Individual Speakers • The federal government has implemented a data progression plan that will u ­ ltimately integrate sexual orientation and gender identity variables into national health surveys. • While questions about sexual orientation are now being field-tested, there are still important issues about gender identity variables that need to be resolved before those questions would be ready for field tests. • Stage 2 meaningful use regulations for EHR adoption do not include the col- lection of LGBT data, as there was concern over the lack of consensus on definitions, and on the standards for structured data entry for gender identity and sexual orientation. • EHR adoption by federally funded community health centers, which provide services to many LGBT people, exceeds the national average and can serve as a model for wider adoption by other health care systems. 1 This section is based on the presentations of Donald Moulds, Acting Assistant Secretary for Planning and Evaluation, Department of Health and Human Services (HHS); Robert Tagalicod, Director, Office of eHealth Standards and Services, CMS; Sylvia Fisher, Director, Office of Research and Evaluation, Health Resources and Services Administration (HRSA); Yael Harris, Director, Office of Health IT & Quality, HRSA; Sue McAndrew, Office for Civil Rights, HHS; and Deven McGraw, Director, Health Privacy Project, Center for Democracy and Technology. 15

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16 COLLECTING SEXUAL ORIENTATION AND GENDER IDENTITY DATA Since 2009, two federal laws have raised the visibility of data collec- tion as a tool for reducing health care disparities. The Affordable Care Act requires that all surveys sponsored by the Department of Health and Human Services (HHS) collect information on race, ethnicity, sex, primary language, and disability status. The law also allows HHS to collect addi- tional demographic data, including data on sexual orientation and gender identity, to better understand health care disparities. In addition, the Health Information Technology for Economic and Clinical Health (HITECH) Act, which was included as part of the Ameri- can Recovery and Reinvestment Act of 2009, provides HHS with the authority to establish programs to improve health care quality, safety, and efficiency through the promotion of health information technology, including electronic health records and private and secure electronic health information exchanges. Six speakers at the workshop discussed the steps that the federal government is taking to promote the collection of sexual orientation and gender identity data as an integral part of efforts to reduce health disparities among LGBT people. EFFORTS AT THE DEPARTMENT OF HEALTH AND HUMAN SERVICES In 2011, HHS released a data progression plan intended to begin the integration of sexual orientation and gender identity variables into HHS national health surveys, explained Donald Moulds. The main objective of the plan, he said, is to carry out a series of cognitive lab and field tests leading to the inclusion of sexual orientation questions on the National Health Interview Survey (NHIS), the department’s flagship survey for collecting health data on the civilian population in the United States. HHS is now in the final stages of field testing the questions about sexual orientation that have been developed, and Moulds stated that testing has gone “extremely well.” The expectations are that HHS will incorporate the new questions into the core questionnaire of the National Health Information Survey in January 2013. “The inclusion of this question or these questions will be a major accomplishment and will be a complement to the current collec- tion of sexual orientation questions in the National Health and Nutrition Examination Survey, the NHANES, and the National Survey of Family Growth,” said Moulds. In addition, the Agency for Healthcare Research and Quality (AHRQ) included for the first time a focus on health care for LGBT populations in the 2011 National Health Disparities Report, the agency’s annual publication on disparities in health care services. For gender identity, HHS has held two roundtable meetings with researchers, experts, and interested stakeholders to discuss the health data

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FEDERAL PERSPECTIVE 17 needs and methodological issues of collecting information on transgender populations. An important finding from these meetings, Moulds said, was that there is a need for further discussions on how best to measure gender identity. THE VIEW FROM THE CENTERS FOR MEDICARE & MEDICAID SERVICES The “meaningful use” of electronic health records provision of HITECH is a powerful tool for getting pertinent data, including LGBT data, to better the health and well-being of all Americans, said Robert Tagalicod. CMS, he explained, oversees more than just Medicare and Medicaid; it also runs the Child Health Insurance Program, the new health insurance exchanges c ­ reated by the Affordable Care Act, and the Innovation Center. Overall, CMS oversees approximately $1 trillion annually in health care transactions. In 2012, CMS established the Office of Information Products and Data Analysis (OIPDA) to lead the agency’s initiative to modernize CMS’s intricate data systems and policies and help the agency to achieve the greatest improvements in health care delivery. The agency, said Tagalicod, sees this as a mission-critical initiative to use data and analytics to guide the agency’s evolution from fee-for-service to value-based purchasing of health care, an approach that links reimbursement to quality and effi- ciency of care rather than the sheer volume of care. The data and informa- tion resources available under this initiative include • Medicare Geographic Variation Trend Data, a unique dataset that leverages nearly 5 billion Medicare claims in an easy-to-use data format that provides key metrics at the state and hospital referral region levels. • Medicare Enrollment Dashboard, which provides, at a single loca- tion, comprehensive statistics or summary statistics on Medicare enrollment Parts A, B, and D, and Medicare Advantage. • Medicare & Medicaid Research Review, an online journal. • CMS Data Navigator, a Web-based search tool that readily connects researchers, policy makers, and the general public to CMS data. The idea driving the development of each of these tools, he added, is to liberate and democratize data in order to inform a wide range of pro- grams as contemplated by the Affordable Care Act. Moreover, the goal is to make data accessible in real time in the same way that credit card charges are available to consumers within seconds of a transaction. Tagalicod then spoke about Section 4302 of the Affordable Care Act, which allows the Secretary of HHS to develop standards for categories of

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18 COLLECTING SEXUAL ORIENTATION AND GENDER IDENTITY DATA data that CMS should collect. Under this authorization, CMS’s Office of Minority Health is working to incorporate data standards related to LGBT health into the agency’s data collection efforts. He also noted that CMS oversees the Medicare and Medicaid Electronic Health Records (EHRs) Incentives Program that provides incentives to providers for the meaningful use of EHRs. The standards for meaningful use of electronic health records are being released in stages. In August 2012, CMS issued its final regulations for the second of three states of the meaningful use incentive program. During the public comment period for the Stage 2 meaningful use regulations, there was overall public support for including LGBT data as part of the overall demographic objective, with the majority of the com- ments supporting an optional versus required criteria. There was concern, Tagalicod noted, over the sensitive nature of collecting this information and over widespread collection by administrative staff. And a significant number of comments questioned the clinical benefit of collecting the information. In the end, the final Stage 2 rule did not include the collection of LGBT data, as there was concern over the lack of consensus on definitions and on the standards for structured data entry for gender identity and sexual orientation. In addition, there was concern about the applicability to all of the various eligible professionals, eligible hospitals, and so-called Critical Access Hospitals regarding their scope of practice. Going forward, said Tagalicod, CMS needs to settle on a usable structured data definition and the terms used in that definition. It also needs to develop a way to inte- grate that data into a data collection system that incentivizes the use of those data and does not merely set off a wave of box checking. The goal should be better care and better health, at a lower cost, without endanger- ing the patient or negatively impacting the quality of that care. HEALTH RESOURCES AND SERVICES ADMINISTRATION PERSPECTIVE The mission of the Health Resources and Services Administration (HRSA), said Sylvia Fisher, is “to improve health and achieve health equity through access to quality services, a skilled health workforce, and innovative programs.” She noted that HRSA is committed to addressing the health care needs of LGBT communities. Accordingly, data collection and program policies are continuously reviewed to ensure that HRSA pro- grams address LGBT health care disparities to the fullest extent possible. As a result of these reviews, the agency revised its funding applications to state explicitly that all LGBT populations are a service population of focus. Language was also included specifying that community health

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FEDERAL PERSPECTIVE 19 care centers can apply for HRSA funding to meet the needs of LGBT communities. To keep health center personnel and staff well informed about the needs of LGBT populations, HRSA recently signed a cooperative agree- ment with Fenway Health in Boston to create a National Training and Technical Assistance Center. This center will provide technical support to all of HRSA’s community health centers on the needs of LGBT persons and populations. Fisher acknowledged that this is an ongoing subject that requires continuous monitoring and intervention at its health centers. In order to assist its community health centers in meeting the needs of LGBT patients, HRSA is gathering data on sexual orientation and gender identity with respect to health care settings. These data are shared with the community health centers. Using a set of analytics tools, HRSA is now trying to assess where its community health centers are with regard to adoption of EHRs and where they are in achieving Stage 1 and Stage 2 meaningful use adoption. Yael Harris noted that Federally Qualified Health Centers annually report data to HRSA as part of their grantee requirements. Based on data reported in December 2011, 85 percent of the community health centers had some sort of EHR and an additional 10 percent planned to purchase one in the next 12 months. Some 90 percent of the centers planned to apply for meaning- ful use incentive funds, and 50 percent were working with one of the 62 Regional Extension Centers funded through the American Recovery and Reinvestment Act to provide information and technical assistance to small- to medium-sized provider practices to support meaningful use of EHRs. In a survey conducted earlier by George Washington University’s Geiger Gibson Community Health Research Foundation, Harris noted that 70 percent of community health centers were using electronic records, but only 45 percent were completely electronic, using no paper in their collection of patient data. The discrepancy with the numbers reported to HRSA in December 2011 may indicate increased levels of adoption of elec- tronic records. These numbers exceed the national rates for ambulatory care providers. In addition, 67 percent of the community health centers that serve migrant populations, 66 percent of those that provide health care for the homeless, and 73 percent of those associated with public housing units have an EHR. Additionally, of the 73 percent of the health centers that provide behavioral health services, about 50 percent use an EHR and are integrating the behavioral health components with their regular EHR. Most of the clinicians working at those facilities now have access to information on their patients’ mental health as well as primary care needs. The goal, Harris added, is to have all 1,200 community health centers meet meaningful use standards and become examples for other health care providers in their communities.

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20 COLLECTING SEXUAL ORIENTATION AND GENDER IDENTITY DATA Achieving adoption of EHRs by rural health clinics has been a par- ticular challenge, Harris said. According to a recent survey by the Health- care Information and Management Systems Society, EHR adoption in rural settings is lagging, in part because of broadband access issues but also because of workforce training issues and limited funds to install EHR systems. HRSA, said Harris, is working closely with the Office of the National Coordinator, the Department of Agriculture, and the Federal Communications Commission to address these barriers. HRSA is also the home of the Ryan White HIV/AIDS program, which includes the 900 Ryan White clinics.2 The agency supports a wide range of activities addressing the needs of men who have sex with men and ­others who have HIV and AIDS, with a particular focus on men who have sex with men and who are also persons of color. “We want to be sure that there is quality care that is provided to them that is non-judgmental, accu- rate, provides for their needs, and also ensures that they receive and have access to those services,” Fisher explained. HRSA has also been collecting data since 2000 on transgender clients who receive services through Ryan White, though the agency found that the initial effort to collect data could have been improved. As a result, HRSA convened a meeting in 2005 of transgender clients who had HIV in order to get a better sense of how to ask the questions around gender identity. As a result of that meeting, HRSA now has two categories for transgender people: the male to female option and female to male option. She stressed that they are continuing to monitor these data collection efforts. According to Fisher, the populations served by Ryan White clinics are those that most need electronic health records because they are popula- tions that most need care coordination. A survey conducted in the sum- mer of 2011 found that more than 78 percent of Ryan White clinics use an EHR. Some 97 percent are electronically capturing patient history and demographic data, 94 percent are capturing clinical notes electronically, and 84 percent view lab results electronically. Problem areas still exist in terms of electronic prescribing, ordering laboratory tests, and capturing information specific to the Ryan White program in EHRs. Fisher noted that one strength of the Ryan White information technology effort is that while confidentiality is protected, data can be analyzed to find gaps and disparities. She added that 51 percent of Ryan White clinics report quality measures directly to HRSA from their EHRs. Fisher noted, too, that HRSA is proud to serve as a co-chair, along with the Office of Minority Health, of the LGBT Work Group that is part of the Healthy People 2020 initiative. One product of the Work Group was a 2 The Ryan White program is a federal program that provides services to low-income individuals with HIV/AIDS.

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FEDERAL PERSPECTIVE 21 proposal to collect population-based data on LGBT people. This proposal was approved by HHS. In 2011, HRSA began reporting for the first time health data about women who are lesbian or bisexual through Women’s Health USA, an annual HRSA publication. This report included data on breast cancer and other health conditions as well as domestic violence, depression, and other psychological issues. HRSA plans to continue pub- lishing updated data annually. On a final note, Harris spoke about the work that HRSA is doing to identify health care disparities as part of a national quality strategy that involves multiple agencies within HHS. As part of this effort, HRSA is focusing on disparity-sensitive conditions that were identified in 2010 by the National Quality Forum. She also addressed the lack of a business case for providers to adopt the EHR except for the incentive programs, a major obstacle to a more widespread adoption of EHRs outside of HRSA-funded health care settings. “Until we make it a seamless process whereby you enter your data electronically and you can have real time data to track how you are doing in quality and where you can interact and improve, we really are not helping providers,” she said. “The goal is to make it seamless for providers to report to CMS, to report to HRSA, to report to other federal agencies, and also to develop the datasets they need in real time to track and identify areas of disparity so that they can improve the quality of care they provide.” CONFIDENTIALITY, PRIVACY, AND THE HEALTH INSURANCE PORTABILITY AND ACCOUNTABILITY ACT The Office for Civil Rights in HHS administers the privacy and secu- rity rules embedded in the Health Insurance Portability and Account- ability Act (HIPAA). These rules, explained Sue McAndrew, protect iden- tifiable health information that is held or obtained by most health care providers, as well as certain other parties such as health plans and, soon, business associates. The rules work by limiting how the covered entities can use and disclose identifiable health information, and they also pro- vide certain rights for individuals with respect to their own information. Providers have an obligation as custodians of protected information to safeguard it and ensure that it is not misused or disclosed without permis- sion of the individual. In addition, the HIPAA security rule provides more definitive stan- dards for safeguarding information that exists in electronic form (e.g., in an EHR). The goal of the security rule is to ensure that that electronic information remains confidential and that the integrity of the informa- tion is maintained. An important component of the security rule is that it also has provisions to ensure that the data are available to those who

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22 COLLECTING SEXUAL ORIENTATION AND GENDER IDENTITY DATA need them when they need them, so there is balance between security and availability that the Office for Civil Rights works to maintain in collabora- tion with the ONC and other offices within HHS. McAndrew also noted that the Affordable Care Act provides the Office for Civil Rights with new enforcement authority to ensure that, with regard to health programs or activities, individuals should not be excluded from participation in, discriminated against, or denied benefits based on race, color, national origins, age, disability, or sex, which includes discrimination on the basis of gender identity and sex stereotyping. HIPAA’s privacy rule has no authority in terms of data collection, explained McAndrew. That is, HIPAA does not regulate the types of data that health plans and health care providers collect, nor does it regulate what can and cannot be put into a medical record. Those matters fall under the jurisdiction of the states and professional associations. HIPAA only comes into play once data are collected, and then only when they are associated with an individual. With the exception of psychotherapy notes, HIPAA does not give preferential treatment or heightened privacy protections to any specific type of health or demographic information. However, states and individual providers can create additional protec- tions for types of data, such as HIV status. Individuals can also ask their providers to provide additional protection for specific data, but providers are not required to agree to that request. The HIPAA privacy rule does give entities regulatory permission to use protected health information for core purposes of providing health care to their patients. The Office for Civil Rights, however, asks that insti- tutions consider how to limit who should have access to that information, a concept known as “minimum necessary.” The regulations also allow general sharing, within this minimum necessary concept, with payers in order for the health institutions to get paid for their services. McAndrew stated that her office is committed to the electronic health record enter- prise, and that it works closely with ONC and others to make sure that the privacy rule is there to underscore and to give certain foundational privacy protections to information in EHRs. Balancing Privacy and Security Concerns with Data Flow “We know we need to collect the data, and we know we need to use them, but what kind of assurances can we give people about who’s going to have access to those data and how confidential we can keep them?” asked Deven McGraw. Answering that question, she said, is critical to ensuring that the nation gets the maximum benefit in terms of improving health care and reducing health disparities from the wide- spread adoption of EHRs. The goal is to enable data flows that are

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FEDERAL PERSPECTIVE 23 n ­ ecessary for improving individual and population health in a way that patients trust. While she noted that there are some additional protections for data collected in federally funded substance abuse treatment programs, those will not apply to sexual orientation and gender identity data. HIPAA pro- vides the prevailing set of rules for these data. Something not mandated by HIPAA is who gets to see what pieces of a patient’s medical record. Health care delivery organizations decide which of their employees— whether it is the front desk clerk, the billing clerk, or whomever—have access to particular types of data in the medical record. One challenge, she noted, arises from the document-centric way in which EHRs collect, present, and share data. This document-centric approach has developed largely in response to the meaningful use provi- sions that require a consolidated data document be sharable among medi- cal providers. The benefit to that approach is that it provides a relevant summary of care for a provider, but the disadvantage is that it is difficult then to segment data, particularly in the case where a patient wants to restrict sharing of certain types of data. ONC has created a data segmenta- tion initiative to actively explore this challenge. McGraw remarked that she is encouraged by this effort and believes that a way will be found to effectively identify and separate some data from the overall EHR. Other issues to consider are how to standardize sexual orientation and gender identity data and where exactly to place it in the EHR. These decisions will impact the solution for segmentation. Overall, McGraw stated her opinion that the technical community will come to an agree- ment soon on how to collect sexual orientation and gender identity data, how to standardize those data, and where specific data will be populated in EHRs so that important demographic data can be provided while privacy and confidentiality protections can be applied to certain data. She addressed the workshop participants in closing by saying, “In many respects, one could say that optimistically, and I am an optimist, that you all are right in the right place at the right time. You might feel behind, but since we don’t really know how to segment the information yet and we’re working on it, coming in on this phase in those discussions may actually turn out to be a little fortuitous.” DISCUSSION In response to a question from Alex Gonzalez, medical director at Fenway Health, about how to treat mental health records that are part of a shared EHR, McAndrew said that anything incorporated into the general medical record is not shielded under the special mental health provisions. Only in cases where the records are maintained separately are they subject

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24 COLLECTING SEXUAL ORIENTATION AND GENDER IDENTITY DATA to additional protections, she added. In that case, they cannot be shared even for treatment purposes without the authorization of the individual. Ignatius Bau asked McAndrew about the kind of outreach or educa- tion planned around the letter that came from the Office for Civil Rights clarifying that section 1557 under the Affordable Care Act would protect against discrimination on the basis of gender identity. He also asked how that fits into broader nondiscrimination protections. She replied that both the letter and a set of frequently asked questions are available on the Office for Civil Rights website. She said her office is continuing to work on both additional regulations and outreach materials. McAndrew noted that there is a shared interest within the department to ensure that discrimina- tion on the basis of gender identity and sex stereotyping is not occurring.