Sexual Orientation and Gender Identity Data in EHRs, convening at Fenway Health, it matters to all patients

Sexual Orientation and Gender Identity Collection in EHRs Convening at Fenway Health 57912Sexual Orientation and Gender Identity Collection in EHRs Convening at Fenway Health 57912 (View on

We will ALL be patients one day.

When it’s our turn, when we are horizontal, in our most vulnerable state, will people:

  • Call us by our correct name?
  • Find out who we are and why we are important to ourselves, our families, our community, society?
  • Do the right things to our bodies, in the most gentle way possible?
  • Heal us?

There’s a far greater likelihood that they will do all of these things if they have the information needed to bring their compassion.

This is why I went to the convening on sexual orientation and gender identity collection in EHRs yesterday. It was held at the iconic Fenway Health (@FenwayHealth), led by the iconic Kellan Baker (@KellanEBaker) from the Center for American Progress and the iconic Harvey Makadon, MD (@FenwayHealth). Robert Wood Johnson Foundation (@RWJF) was the sponsor, and now I come to find out that Mike Painter, MD (@paintmd) was the part of RWJF that sponsored – they’re iconic, too 🙂 .

The reality is that health care is not collecting this information accurately and is therefore not doing the things above for every patient, and not just lesbian, gay, bisexual, transgender, queer patients. All patients. And  not just patients that are horizontal, but who are just as vulnerable. And, Kaiser Permanente has not figured this out either. Like everyone in the room, we are trying. We need help. And that’s why we were there.

Fenway, Harvey, Kellan, Sean Cahill, PhD have produced a whole web site, Do Ask, Do Tell, which is brand new, and saves a trip to multiple pages on web sites and journal articles that I’ve been sending around to people for two years. I wrote about some of these principles in a previous post (and this paper is very worth reading: Now Reading: Electronic medical records and the transgender patient – to eliminate, not create, disparities | Ted Eytan, MD).

Specifically on the Do Ask, Do Tell website is a comment letter for Meaningful Use Stage 3, which lays out a lot of the specifications and background on SOGI (“Sexual Orientation, Gender Identity”) data collection. Very valuable reference – go here and read all of the linked letters.

Things like, accurate name and pronoun, organ inventory, identity, are pieces of information relevant to all patients.

Many human beings do not leave this life with the organs they came with, LGBTQ or not. There has to be a conversation about decoupling “sex” designation in medicine and “what organs are inside your body.” This is what health care, the verb, not the noun, is for 🙂 .

To get there, we need to figure out what the right questions to ask are, how to ask them, who should ask them, and how to train them to ask them, in what settings to ask them. I did not appreciate any of these things very well before I came to Fenway yesterday. I definitely walked in with some eagerness about questions that I had, which got answered (learning to manage myself better every day), and at the same time, I got these questions that are new to me, and just as important, if not more.

And by the way, I’ve known about Fenway Health for a really, really, really long time and have been inspired by their nation-leading work on LGBTQ Health. I have always wanted to go there and see it. I felt as honored to be there as their patients are to get care there.

This group is not EXclusive, it is INclusive, because we all want to figure this out, and at the same time, this specific project doesn’t have staff currently, so that’s a hurdle. As Kellan says, there is much to do to get this off the ground. And, we’re going to do it, please join if you want to do it too, before it’s too late, for our patients, and ourselves. Tick tock!

There’s always a photoshoot in my world, especially when committed humans are involved. Enjoy, creative commons licensed, feel free to share. For my fellow attendees also from iconic places, if you have other observations, by all means, identify yourself, post in the comments, link to your blog or other resources, more is better, thanks for teaching and learning.

Ted Eytan, MD