Using EHRs to eliminate rather than create health disparities for LGBTQ people: Landmark decision by U.S. DHHS

Via: Landmark Decision By Dept. of Health and Human Services Will Reduce Health Disparities Experienced By LGBT People | Fenway Focus (@FenwayHealth)

The finality in the way the rule is written reminds me of the R v North West Lancashire Health Authority Decision in 1999: “Appeals dismissed. Permission to to appeal to House of Lords Refused.”

That decision quashed forever the UK’s National Health Service policy of not covering transition-related care for its transgender or gender non-conforming residents.

When I visited Charing Cross, the world’s longest running gender identity clinic, in London in 2013, all of the medical records had to be managed on paper because their EHR systems were incapable of managing gender identity successfully and within policy.

This decision is pretty big one too, for the U.S. Health System, and one that might ultimately help our colleagues in the NHS as well.

The new rules released October 6 by the Centers for Medicare and Medicaid Services (CMS) and the Office of the National Coordinator of Health Information Technology (ONC) will require EHR systems certified under Stage 3 of Meaningful Use to allow users to record, change, and access structured data on sexual orientation and gender identity.

And here’s what the final rule says:

We thank commenters for their feedback. Given this feedback, the clinical relevance of capturing SO/GI, and the readiness of the values and vocabulary codes for representing this information in a structured way, we require that Health IT Modules enable a user to record, change, and access SO/GI to be certified to the 2015 Edition “demographics” certification criterion. By doing so, SO/GI is now included in the 2015 Edition Base EHR definition. The 2015 Edition Base EHR definition is part of the CEHRT definition under the EHR Incentive Programs. Therefore, providers participating in the EHR Incentive Programs will need to have certified health IT with the capability to capture SO/GI to meet the CEHRT definition in 2018 and subsequent years.

I was at the convening mentioned in the Fenway Article and wrote about it in this blog post: Sexual Orientation and Gender Identity Data in EHRs, convening at Fenway Health, it matters to all patients, where we took this lovely photograph:

Sexual Orientation and Gender Identity Collection in EHRs Convening at Fenway Health 57914
Sexual Orientation and Gender Identity Collection in EHRs Convening at Fenway Health 57914 (View on Flickr.com)

Even though I was there, I am not responsible for making this happen. There’s the Do Ask, Do Tell Project Team, supported by the Robert Wood Johnson Foundation (@RWJF). I’m thinking Kellan Baker (@KellanEBaker), Harvey Makadon, MD (@HMakadon), Sean Cahill, PhD. And many others (please add their names in the comments) who deserve your thanks.

Even though I didn’t make this happen, I and millions of other people are the beneficiaries. This work will create a world where electronic health record systems work for us, to eliminate rather than create disparities. Thank you!

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Ted Eytan, MD