Digitized health records may be a step forward for improving overall health care, but how will they safely and competently account for the medically and socially marginalized LGBT community?
Information sharing in medicine and health care is undergoing major changes in the United States, but if these changes are improperly managed, there could be devastating repercussions. Lesbian, gay, bisexual and transgender (LGBT) populations - which already experience staggering health care inequalities - have the potential to be hit especially hard by these reforms.
In a 2009 survey conducted by Lambda Legal and its partner organizations, of nearly 5,000 LGBT individuals, 56 percent of gay, lesbian or bisexual people and 70 percent of transgender people indicated they had at some point experienced discriminatory or substandard health care, highlighting the particular precariousness of their situation as well as the need for an overhaul of the current system.
Over the next few years, medical institutions nationwide will continue to implement Electronic Health Records (EHRs) in their facilities. The 2009 American Reinvestment & Recovery Act (ARRA) puts pressure on institutions to implement EHRs by way of Medicare and Medicaid payouts up until 2015, at which point institutions that have not shown quantifiable improvement of care with the use of EHRs are then penalized according to a percentage scale increasing yearly.
EHRs are digitized versions of a patient's medical information, intended to replace the cumbersome, outdated paper charts currently prevalent in many medical practices, from doctors' offices to emergency care centers. EHRs confer the benefit of a patient's health information instantaneously anywhere it's needed. An EHR can be created, updated and reviewed by authorized staff members across various health care organizations - one such record can aggregate information from multiple doctors, pharmacies, workplace clinics, medical imaging facilities and more.
What to include in an EHR seems commonsense to a degree. Age, ethnicity, allergies and medical concerns or past operations, for instance, are all relevant to efficient health care practices. However, how and whether to include other identifying information, such as sexual orientation and gender identity, and whether that information is in fact relevant at all, may not be so straightforward.
Major concerns have emerged in the LGBT community over EHRs as community members, advocates, researchers and scholars debate the essential issue of how individuals who identify as being LGBT decide whether, and how, to include their status in an EHR. Who - doctor or patient - should initiate this conversation? When is it necessary or relevant and for whom, keeping in mind LGBT populations are as diverse as the general population itself? Further, there is the pressing question of how to prepare the medical community - one which is by many accounts woefully unprepared in various regions of the US - to handle this information as safely and competently as possible.
The Benefits of Broad Disclosure
The pressure put on health care providers to adopt EHRs has forced an immediate confrontation with these questions. How do we provide safe and inclusive ways to share information about sexuality and gender status and avoid pushing people in the LGBT community into the closet, medically-speaking, thereby perpetuating a "don't ask, don't tell" policy in the nation's health sector? One of the valuable benefits of EHR inclusion of LGBT status, it is argued, is that it would bypass lots of doctors who currently don't ask or don't know to bring up the issue.
Barbara Warren, the director of LGBT health services at Beth Israel Medical Center in New York City, has been tackling issues of patient safety, confidentiality and health for years. Beth Israel is in the process of implementing EHRs, and Warren has seen firsthand the delicate challenge they present.
"I, for a long time, have been an ardent advocate for LGBT inclusion and visibility across the board, because without people being fully and completely who they are, everything suffers," Warren told Truthout. "[LGBT individuals]' legal rights suffer; their health suffers; their equality suffers."
While there is certainly a difference between "being who [you] are" and being externally required to supply information about one's sexuality or gender, there is widespread agreement that when it comes to pertinent health issues, disclosing such information to providers can make for a more accurate - and more useful - patient profile.
Serious risks to a person's health can be overlooked when risk factors are not known. Stress related to an individual's sexuality can have serious health impacts, for instance, as can physical indicators that may go undeclared when neither patient nor provider knows to look for them. A male-to-female transgender can, for example, still be at risk for prostate cancer, which a doctor would not know without certain essential, anatomical information.
Harvey Makadon, director of the National LGBT Health Education Center at The Fenway Institute in Boston, noted at a workshop convened by the Institute of Medicine (IOM), the health arm of the National Academy of Sciences, in 2012 to discuss LGBT data collection, that men who have sex with men, but identify as heterosexual to their providers may not receive necessary education about HIV or other sexually transmitted infections which disproportionately impact men who have sex with men, when they are among the population most likely to be affected by the disease.
Makadon cited a study by the New York Department of Mental Health released in 2006 that found that 9.6 percent of men who identified as heterosexual had had sex with a man in the past year. That means nearly one in 10 men who actively identify as straight have engaged in sexual behavior with another man, supporting the need for health care providers to fully understand the intricacies of an individual's sexuality and lifestyle.
When health care providers have a better understanding of the endless variations on, and manifestations of, sexual orientation, they are better able to meet their patients' needs.
Beyond physical health concerns, a certain amount of trust and openness between patients and providers is also ideal to ensure a safe, comfortable environment.
"It's not a good idea to feel like you have to hide who you are and what your relationships and stressors are from your health care providers," noted Warren.
Including a person's status on an EHR may mean not having to waste unnecessary time at an appointment, as well as making the information readily available if the patient is for some reason unable to share it, for instance due to a situation involving loss of consciousness.
Forty-eight-year-old Serena Worthington, the director of community advocacy and capacity building at Services & Advocacy for GLBT Elders (SAGE), personally testified to the desire not to have to bring her status up in every conversation when seeking medical attention.
"I'm out to everyone," Worthington reported to Truthout, "but I don't want to have to come out to doctors over and over again - people do get tired of coming out 50 million times."
There are significant reasons for collecting this data as well that extend beyond the individual's health and well-being. Data collection ensures the ability to examine the quality of care LGBT populations are receiving and to make sure that care is on par with that of the general population. More available data equates to an increased ability to treat populations with certain commonalities. Makadon pointed out that acquiring this information forces clinicians to confront and deal with their patients in a very real way; it makes doctors more accountable for the human being in front of them.
The Drawbacks to Disclosure
Despite all the benefits of including detailed information about a person's status in an EHR, certain important safety issues have arisen surrounding the health care of LGBT people with the digitization and widespread accessibility of this information.
Those who want to be sensitive to their patients' needs may not always know how to do so productively. "A lot of people don't know what the right thing is," said Warren. "We're coming out of centuries of oppression - it was for a long time the law of the land; it's hard to change that in one or two generations."
Evidence put forth by the IOM reveals people who identify as LGBT are currently less likely to seek preventative treatment as a result of the awkward exchanges that take place in the medical establishment surrounding their sexuality. The Lambda Legal survey revealed that shocking percentages of gay, lesbian, bisexual and transgender people worried about their access to health care and how they would be treated if their status were divulged. More than 28 percent of gay, lesbian or bisexual individuals and 73 percent of transgender people surveyed believed they would be treated differently than non-LGBT people seeking similar care.
Shane Snowdon, director of Health and Aging at the Human Rights Campaign in DC and project advisor of the Joint Commission LGBT Field Guide, added it's generally not about shame or embarrassment when someone chooses not to bring up their status with a provider; it's about medical priorities. "If you've got 10 minutes, you don't want to use it up having a dialogue," she told Truthout. While in some cases EHRs might pave the way for this discussion, they alternatively have the potential to initiate what could be an unwanted conversation.
In some cases, EHRs could present a serious and dangerous disadvantage to the patient. Warren pointed out the lack of equal protection under law across the United States. "If you're outed in your health record, and you're not necessarily in a state where you have equal protection, there are possible problems as a result that you could be exposed to.
"Equal protection under law is also related to access to insurance," said Warren. "We don't have that guarantee in every state; we don't have marriage equality in every state." Many states, in fact, treat same-sex partners as complete strangers in medical facilities, she noted.
Warren said some of her patients would be happy coming out to their chosen New York City-based providers, but feared the repercussions of, for instance, winding up unconscious in an emergency room in a less gay-friendly region in the United States with that information on their record.
"There's an issue of privacy, but really for most people it's not so much the privacy," she added. "It's more the concern about stigma, discrimination and competency."
"There's unconscious bias, but there's also conscious bias, and there's proud bias," added Snowdon.
Josephine Tittsworth, a graduate student in social work in Texas, who is post-op male-to-female transgender, has experienced these discriminatory practices firsthand and is particularly wary of how the unrestricted visibility of EHRs takes control over this information away from the patient.
Tittsworth provided a pre-op anecdote to Truthout: "I've had an experience with a psychiatrist before where he said, 'show me your penis' - I displayed my penis to him, and he said, 'I'm not going to provide you with services.' That was in Texas."
"If you have a doctor who is biased against transgender people, they can and will play with this person and ridicule this person," she said. "Even people at the front desk - this is the problem we run into with the database - the wrong people get access to this."
The realities Tittsworth describes extend beyond transgender people - any deviation from the "norm" is at risk for discrimination. Lambda's survey included several real-life stories of gay and lesbian patients being ridiculed by providers; in one case a gay man was instructed to change his "dirty lifestyle."
Tittsworth's experience is also all too common according to the data collected by Lambda. The survey revealed nearly 11 percent of lesbian, gay or bisexual people and nearly 21 percent of transgender individuals reported an instance in which a health care professional had used abusive language toward them.
"I've been telling my providers myself there's pros and cons with having it out there on this national database," said Tittsworth. "There's a serious problem if you don't know who your doctor is. Being in a rural area in Texas, I would not feel comfortable - even in a big city we experience discrimination, but it's even worse in the rural areas."
Moving Forward With Implementation
Advocates have opened up the dialogue about LGBT status and health records, generally encouraging broad inclusion and data collection, and EHRs will move forward regardless of potential risks. Now the medical community must work closely with LGBT advocates and researchers to determine the best possible inclusion practices.
For one, the language and labels used toward identification must be thoroughly and continuously re-examined. A person's sexual status and identity - often complex, dynamic and fluid - cannot necessarily be singularly checked off in a box, nor should they be, according to those well-versed in LGBT issues. These labeling problems already exist for LGBT individuals within the medical community, but at a time when this information could become widely accessible in a national database, it's more important than ever to update antiquated systems and practices and consider how to move forward productively.
Snowdon said when it comes to EHRs, the question should not be one of status - i.e. "gay" or "bisexual" - but rather the specific identification of a person's relationships. Labels, she said, are irrelevant to a person's health care without a deeper understanding of their behavior and lifestyle.
"Sexual behavior is completely different than sexual orientation," said Snowdon, echoing the statistics about heterosexual men provided by Makadon. "Sexual orientation is not useful medical information."
Further, "in doctor's offices we're confronted with clipboards that only offer "single," "married," "widowed," "divorced" - that's completely wrong for health care," she said. "It's amazing how many clinics have no idea that they should be asking not about marital status, but about relationship status."
"EHRs need to have the ability to identify same sex partnerships," she continued. "They have a box in the EHR for marital status; they just need to add partner . . . you want to know who the person is in the waiting room. That has a much more real-life impact."
Snowdon also said there must be a way to account for an individual's exact medical history - not merely the label "transgender," for example, but the specifics of status and anatomy for that person.
"There should be a way to say this is what I was born, this is how I want to be honored and accommodated," said Snowdon. "A lot of transgender people want that and want to give it. They would like to take control of their situation, but providers get really confused."
Warren detailed other broader steps she felt the medical community and the nation as a whole must take to smooth the passage to safe disclosure on EHRs: "Equal protection is needed, marriage equality, cultural competency in education and health care. We're asking for all of that. We wouldn't question it around race or ethnicity."
Worthington, who works with elderly LGBT individuals in her position at SAGE, might call this mindset idealistic. Some of the people she works with have spent a lifetime with deeply rooted understandings which likely won't be changing anytime soon, in part because LGBT elders are disproportionately victimized when it comes to elder abuse in the medical community, but also due to lived experience.
"There's a wariness for these people," said Worthington. "They were coming of age when it was illegal to be gay - you were considered mentally ill; you could be fired; you could be killed; you could be tossed out of the military. That was their formative experience, and based on a lifetime of oppression, they're not going to be coming out to people left and right, generally speaking."
Worthington's experience reveals just how sensitive, careful and targeted implementation must be. "We need to get past this being a secret or being a thing that's not normal," said Warren. "We can support the health relevance, but we must do this in a way that respects and protects people in a society that's not 100 percent there."
The solution according to Warren is zero tolerance for willful discriminatory practice, which she conceded is easier said than done.
Snowdon added that patients should be empowered to start the conversation around their sexuality, when and where they feel comfortable doing so.
"I think the fields [for this information] should absolutely exist," she said. "At this time we should not embark on a massive program to ask every patient their orientation - that's best initiated by the patient, however, whenever and with whomever they want to volunteer it. They should be told who else will have access." Snowdon agreed training, meanwhile, should be a primary focus for medical practitioners.
Tittsworth said she does see both sides and that it would be practical to have all the information readily available without having to continually explain it, but the practicality still hinges on individual circumstances.
"It really depends on the person and the situation," she said, of status disclosure. "One size does not fit all."
Ultimately, however, Tittsworth does not believe our society is adequately prepared to handle any sort of large-scale disclosure.
"The hetero-normative person has privilege in our society, and they don't realize these things because they've never had to deal with it," she said. "There needs to be some kind of regulation in order to ensure the safety and security of the individual patient, and I just don't think that's in place yet."
The workshop convened by the IOM to discuss these issues ultimately determined that with EHRs moving forward, the best case scenario was to facilitate a self-identification process for LGBT individuals and to always offer the ability to opt out of answering related questions. The process of developing precise language and identification systems and training practitioners will be an ongoing one.
According to Warren, "It's going to be a mandate that the question is asked . . . people in the LGBT community are going to more inclined to be forthcoming if they don't feel it's a threat to be who they are."