How can we better improve care for LGTBQIA+ patients in and beyond the practice suite?
This discussion will provide insights on continuity of care, pain points in practice and also dive into how systems are implementing best practices for managing the data and patient experience of their LGTBQIA+ populations.
Concurrent to AMA celebrating Pride Month, our discussion catalyzes active and ongoing research which directly improves patient outcomes.
Join us here on #OurAMA Physician Innovation Network to learn & share best practices and spur critical dialog!
Connect
Thanks for your question Celine! There are numerous challenges. After the first year of SO/GI data collection under Stage 3 Meaningful Use requirements, nearly 1800 U.S. Health Centers reported: 77% of all patients were missing SO data, and 63% of patients were missing GI data. SO/GI screening in busy hospital and clinic settings is probably not a top priority, but also clinicians are often uncomfortable asking (Grasso et al, 2019).
Many health centers have not put these data fields in the demographic sections of their EHR which might give more patients an opportunity to complete that information themselves--something both clinicians and patients might be more comfortable with. Finally, another issue is that once that information is in the SO/GI fields, patients may not have control over who sees it, and that can be dangerous and lead to mistreatment or perceived discrimination in a number of care settings or with covered entities. Competency trainings may help but do not necessarily resolve this problem.
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One of the problems with data collection in EHRs today -- is even when data are collected, they are not used! Why collect data if we aren't going to use it. Clinical decision support often provides the *wrong* recommendations for transgender patients -- even when those data are collected. It's essential that when we collect data, we ensure it is captured in a way that it can be made useful to those providing care downstream.
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Putting SO/GI into demographic fields of EMRs is extremely complex, as there often are many linked clinical decision support features related to demographics. As simple examples, organizations often have their EMR set so that only females can get pregnant and only males can have prostate exams, etc. It's not trivial to build in the logic that allows the machine to know that "this is a female who can get prostate cancer".
Similarly, the current EMR model requires every single organization to build in SO/GI demographics and clinical decision support. So if you're faced with all sorts of "more urgent" requests that impact larger groups, it's not unreasonable for organizations to prioritize these changes - while important - to a lower priority.
With the classic approach we have taken to EMRs, it will be a decade or more before everything we want is in all EMRs. And this is only the starting point of building EMRs that are responsive to patient requirements. In pediatrics after more than a decade we are still struggling to get the things we need into EMRs.
A better approach may be to rethink how we approach EMR design. If we redesign them simply as a tool that uses demographics and clinical decision support that are supplied externally (from sources of truth in the cloud), the changes we want can be made far quicker and more accurately. This too will take a decade, but we will be in a far better position if we revolutionize our approach to HIT than if we simply incrementally tweak it.
BTW - can we please not use "provider" in these discussions? If you're talking about a human being, please use the word "clinician" if you can't say physician, nurse, NP, etc. "Provider" is a pejorative word to many of us clinicians. Thanks
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As some of my copanelists have mentioned, the SOGI data are often missing and/or underutilized in health care delivery systems. I recognize the sensitivity for some patients' SOGI data; for example, I often see children and adolescents who may not be ready to share their SOGI status with their parents. However, our electronic health records (EHR) may inadvertently share those details with their parents anyway. It's a complicated balancing act: we don't want to unintentionally "out" our patients when they're not ready, and we (as healthcare clinicians) don't want to stigmatize SOGI by creating a separate channel of communications. Within health systems, we can work to normalize the SOGI status by encouraging more dialogues among other clinicians, more curiosity among our peers, and openness among our patients.
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I would also add to this that we need to make sure that the staff at medical practices and hospitals actually use the SOGI data that is entered. I have seen nurses or other ancillary at the staff use birth names and birth pronouns, despite them being very clearly listed in the patient header.
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Sexual orientation is well documented as a fluid phenomenon, i.e. one that is not fixed or static over time within an individual. One EHR limitation in data handling arises when a new SO option is inputed for a patient and prior data is lost. One aim of SO data collection is epidemiological - risk factors, relevant behavioral screenings etc. For individuals who have lived experience with an identity that may not be the one currently reflected in the EHR, EHR overwriting discrete data points may be a limitation.
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Thanks for pointing out the provider clarification. I usually use it in the organizational sense but i definitely slipped there.
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In a recent visit to a LGTGQ clinic to discuss their needs for the EHR, we heard that one important goal was that a patient is only addressed by the names and pronouns which which they identify. As Dr. Cooper mentioned, this starts with the clinicians and staff following through with this and includes when someone at the front desk or in billing is speaking to the person. This can be improved by appropriate visual hierarchy that emphasizes the appropriate names/pronouns. But this appropriate addressing of the patient also should be a part of the system itself. At this clinic, they frequently hand out surveys to be filled on out iPads to their patients. A request was that the survey only pulls from the identified names/pronouns data fields for how a patient is addressed. Again, this should be a straight-forward solution, but often is overlooked in thinking more about the data instead of the person.
Connect
Hi Everyone! Great comments so far on this chain! (BTW: I've often heard SOGI as "Sexual Orientation and Gender Identity", not "Information" as stated in the question. Did something change?)
Although a goal of many EHRs is to use SOGI data to better inform clinical decision support about health, I would encourage EHRs to avoid being too reductive, especially with sexual orientation. I often find the sexual orientation that many patients identify with wouldn't necessarily fit a "standard definition." For example, I have many cis-gender women who have sex with other women and identify as gay, rather than lesbian. I have had transgender women who are attracted to cis-men also tell me that their sexual orientation is gay, rather than straight. In both cases, I honor the patient's self-identity. Although they identify with the same sexual orientation, their sexual health needs may be very different.
Their sexual health needs may not be very different, however. That is the other danger in being too reductive with SOGI data and clinical decision support. Some patients whose SOGI demographics might suggest low risk, may actually be at high risk for STIs, HIV, or unintended pregnancy. If we rely too heavily on SOGI demographics to decide with whom we discuss HIV prevention, STI screening, preventive vaccines, or family planning, we will miss important opportunities to promote sexual health.
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Even if your EHR has a flawless solution for SOGI data collection and analysis (which it probably doesn't), that's not going to help you get paid if the payers can't consume that information especially if it pertains to intersex. Most payers continue to use binary sex logic, and the concept of intersex can't be exchanged because only male or female can be selected. That means patients with a legal sex of intersex have to be documented as either male or female in order to assure that the claim isn't denied. This can result in vendors asking what seem like duplicate questions to try to make sure clients are appropriately reimbursed, even if intersex is documented accurately in the EHR.
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Hmmmm.... It's not so straight-forward. For a M->F transexual whose pronoun is "she/her", you need to ask some "male" GU questions and not the "female" OB/GYN questions. So it takes programming to sort these out, which isn't always available or has a lesser priority than things like COVID. If this was cloud-based, it would be easy - do it once and everyone has it. But instead, each practice and hospital has to do the programming to make this possible.
Good thought, though.
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Health care professionals are often unsure about when SOGI data matters in context for patient care, and when to focus on it within a clinical interaction. This is related to a lack of training in cultural humility with sexual and gender minority people, and a lack of work mitigating implicit bias among health care professionals toward sexual and gender minority patients.
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Even though SOGI data fields are mandated for ONC certification, there are inconsistencies in how each EHR vendor has programmed these fields into their systems. These differences alone could impact care and patient experience depending on the EHR used by the clinician.
SOGI data oftentimes is not integrated throughout the patient's record; therefore, this limits the potential utility of this information in patient care, particularly for clinicians who may be less experienced in caring for LGBTQIA+ people. We know many of the health disparities for the LGBTQIA+ community but our EHR systems do not differentiate these or flag them at all.