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Adapting Hospital Records to the Needs of Transgender People

Posted on July 13, 2015 I Written By

Andy Oram is an editor at O'Reilly Media, a highly respected book publisher and technology information provider. An employee of the company since 1992, Andy currently specializes in open source, software engineering, and health IT, but his editorial output has ranged from a legal guide covering intellectual property to a graphic novel about teenage hackers. His articles have appeared often on EMR & EHR and other blogs in the health IT space. Andy also writes often for O'Reilly's Radar site (http://oreilly.com/) and other publications on policy issues related to the Internet and on trends affecting technical innovation and its effects on society. Print publications where his work has appeared include The Economist, Communications of the ACM, Copyright World, the Journal of Information Technology & Politics, Vanguardia Dossier, and Internet Law and Business. Conferences where he has presented talks include O'Reilly's Open Source Convention, FISL (Brazil), FOSDEM, and DebConf.

More than just about any other institution, hospitals and clinics have to deal with the unexpected. People with the most unusual characteristics and problems drop in all the time. But electronic records, being formal documentation, like regularity. The clash between diversity and computerization explodes into view when a transgender or gender-queer person walks in.

I have written about the strains that transgender people put on an EHR earlier as part of my family’s encounter with the medical system. Recently I got a chance to talk with a leader who has taken some of the necessary steps to fix systems: Scott MacDonald, MD, working in the health system of University of California at Davis.

A thrust to improve UC Davis’s handling of LGBT clients preceded Dr. MacDonald’s arrival. A group of staff and clinicians interested in providing better care to LGBT people decided to take steps to address the needs in that area. The institution made an ethical commitment to reducing disparities in care. The group recognized that the information in the record was deficient–they often didn’t even know who identified as LGBT.

The first step in this information gathering is training health providers to ask for the information in ways that are sensitive to patients’ feelings, and to become comfortable with it. The next step is deciding what to do with that information, and the third is figuring out how to store it in a structured way.

As MacDonald says, “The first priority is to train providers to understand why this data collection is important, explaining that they cannot care for a person whose life situation they don’t understand. Research (especially for reducing disparities) is a close second priority. An electronic means to capture the data needs to be created along with these efforts. Once the data is available in a formal, structured way, we can encourage and train clinicians to ask the pertinent questions and respond to the information sensitively.”

When MacDonald joined the organization, he brought technical expertise with working on disparities in ethnicity and language. He started two surveys: one of the patient population and another of the staff.

The patient survey showed that for the most part, patients were glad to be asked about their sexual orientation (which is different from sexual behavior, although related). They were particularly open to the question if their primary care provider was the one holding the discussion. Naturally, some expressed privacy concerns and wondered who might have access to the information once it was recorded.

Health care providers also showed a willingness to learn more about LGBT issues and be listed in the UC Davis registry as an LGBT-welcoming provider. Over time, without an explicit mandate from leadership, the information collected on the sexual preference of patients increased. UC Davis also provided resources for training in LGBT issues via a web site.

Before starting, UC Davis interviewed the clients of a local clinic specializing in gender issues, in order to flesh out their understanding of patient needs and sensitivities.

Now we get to the heart of the IT issues. Any record system used by a health care institution needs at least the following to handle transgender and gender non-conforming patients:

  • A way to list their preferred name and gender, along with the name and gender that appear on their insurance cards and other official documents. Transitions can take years, and patients often have insurance with the old name and gender long after they have made the determination to be known in a new way. Gender can also be a fluid and evolving concept for some patients.

  • Ways to record the factors that affect gender, such as what surgeries they have had for gender dysphoria and what hormones they are taking. Someone who identifies as male may still need to have a regular Pap smear. A male-to-female transgender person may have a very different normal range on a blood test from someone born female (cis-female).

UC Davis had licensed an Epic EHR, but at that time Epic had only a few suggestions to offer. For instance, they suggested adding a special flag for transgender patients, but this would be too limited a way of handling the range of gender issues encountered, and would not provide adequate clinical information. UC Davis thus launched into a series of customizations, which Epic in turn compiled into an implementation guide that has been used by other customers.

The goal at UC Davis was to make it easy for patients to enter data at in the privacy of their homes through Epic’s patient portal. The interviews at the partner clinic had showed that many were comfortable providing information this way that many were comfortable providing information this way. Besides asking for assigned sex at birth, click-buttons in the portal’s web page offer common choices for current gender identity and sexual orientation. The patient could also enter free-text comments if the predefined choices didn’t capture their identity.

The same information could be entered by clinicians as well. People viewing the record could not tell whether the gender information was entered by a clinician or directly by the patient (although on the back-end, the system preserves the provenance of the information). MacDonald said that the source of the information was ultimately the patient, so it doesn’t really matter who entered it.

What’s important is that the gender-related information, formerly stuffed into free-form text somewhere in the record, was now stored in a structured format. This allows UC Davis to fulfill its mandate to track how it is addressing disparities in care. In the future, such information may also feed into clinical decision support tools.

The gender information is not displayed prominently, but is available to all staff who have access to patient records and seek it our for purposes of patientcare. It is protected by the usual information security measures in place at UC Davis. The information is of greatest use to the primary care provider, but is also used by in-patient nurses and special departments dealing with transgender issues.

The patient’s preferred name was easier to handle. Epic already allows records to distinguish between the official name–used for legal and insurance purposes–and the preferred name. The record offers several descriptors that explain what the preferred name is, such as a nickname or alias. To this list of descriptors, UC Davis added an option applicable to transgender patients.

The remaining missing information is the status of a patient during and after transition. A record can’t yet record birth sex in a separate field from gender identity. It can capture sex as cis-male or trans-man, but that doesn’t gracefully account for the combinatorics of birth sex, gender identity, legal sex, and so on. Transition-specific surgeries and hormone therapy can be captured as a part of surgical history and the medication list, but there is no standard way to record organ inventory. Those things are still listed in free-form text.

However, Epic is looking at ways to adapt its software at the deep level to show this diversity of status. This is something all vendors need to do, because more and more people of all ages are identifying as transgender or non-conformaing as the public gets used to the idea that this kind of identity is within the range of normal. The needs of the population are complex and urgent, so the faster we fix the records, the better will be the care we provide.

Is EMR a Four-Letter Word? You decide

Posted on January 23, 2012 I Written By

Priya Ramachandran is a Maryland based freelance writer. In a former life, she wrote software code and managed Sarbanes Oxley related audits for IT departments. She now enjoys writing about healthcare, science and technology.

For quite some time now, I’ve nursed my own doubts about:
– how effective EMRs are (disastrous in the short term, long term they’re supposed to make life easier, but we haven’t seen any evidence of that yet)
– why physicians are being paid to implement something that makes logical sense (you need something to nudge people out of status quo. And probably in the government’s thinking, what better use for taxpayer dollars, right?)

I came upon this blogpost, provocatively titled Why EMR is a four-letter word to most physicians. Adam Sharp, Par8o (“pareto”, not “par 80”) founder references this post from the Healthcare Blog. The discrepancy in the rates between adoption of any EMR is mind-boggling. It was projected to be close to 56.9% in 2010, vs. adoption of a fully functional EMR (projected to be close to 10.1% in 2010). (I’m not using the 2011 rates because the rates for fully functional EMR adoption in 2011 are not listed).

A reason Sharp gives for incentives and threats of decreased payment are “the industry and physicians have known for years that EMRs do not improve productivity and that it is highly questionable that EMRs lead to better patient outcomes”. While I would agree that in the short term, there is decreased productivity, I’m not so sure you can dismiss there is no productivity increase over the long term. This report about a UC Davis study for example, shows that the loss of productivity was just one month for internal medicine, and that productivity increased to pre-EMR implementation levels in the next six months. The not-so-good news is that productivity levels declined for pediatricians and family practices.

I interpret these findings like this: for specialties where there is loss of productivity, sure, the whole exercise needs a rethink. But in cases where your productivity is at par with your pre-EHR levels, I think there is a hidden benefit that detractors are more than willing to gloss over – the availability of patient data. Data is the holy grail – it’s up to us to figure out whether and how we use it.

Sharp also imagines some doomsday scenarios – of EMR vendors with uncanny abilities to do as they please.

“The goal of EMRs is to wrestle control of healthcare away from the doctor-patient relationship into the hands of third parties who can then implement their policies….by simply removing a button or an option in the EMR.”

Maybe I’m turning turncoat here and letting you guys in on the best kept secret of the IT industry, but every vendor I’ve worked for, past and present, figuratively quakes in his IT boots when it comes to contract renewal. Even for COTS products, vendors actually customize things here and there for customers, till you have 25 versions of the same code, all just to keep their customers happy and paying. While I’m pretty sure there are rogue vendors who can give you the best EMR nightmares money can buy, I also do think customers can, and do, help rein in errant ideas. In other words, vendors can’t simply remove buttons and options or randomly start charging you for stuff, not unless you let it happen. And you, the customer, hold the purse strings, ergo YOU, not the vendor, call the shots.

I don’t quite find myself agreeing with the cynical conclusion of the post which is that the point of EMRs is to wrest control away from doctors and patients into the hands of third parties who wish to regulate choice and eligibility. But there’s plenty there that’s food for thought. Go check it out.