Birth Sex ValueSet only allows M and F

[cooperthompson]

This may be more of a UDS question than UDS+, but requiring a birth sex be only M or F seems problematic, as many states allow other values on birth certificates. US Core handles this with NullFlavors, but UDS+ does not.

This means that intersex or other non-binary sex values must get folded into either M or F codes, which means that by definition the birth sex values you get from UDS+ reporting will not be reliable. When you get an "M" as the birth sex, you won't be able to tell whether the patient's birth sex was actually male, or if a non-male sex was "folded in" to the M code by the submitter.

[cooperthompson]

It also means that a submitter cannot rely on a US Core compliant API to gather UDS+ data from a certified EHR. This is a broader problem, but even when a health center is using a non-EHR data submitter, the EHR will still need to do UDS+ specific development to support the movement of data from the data source to the data submitter.

[nbashyam]

Cooper, currently the UDS+ profiles are aligned with the UDS Manual and hence values other than M/F are not allowed. In the future it can be considered for alignment between UDS and US Core.

[cooperthompson]

I'm less concerned with alignment between UDS and US Core, but more concerned about the UDS Manual having this issue. Is it well understood that the UDS birth sex data and any data derived from it is, by definition, not reliable?

[cooperthompson]

(note, I'm using the term "non-binary" here as a term for patients whose birth sex is not M or F. I do NOT mean it as a gender identity in this situation).

Given some discussion we had about this being a UDS requirement we can't change as part of UDS+, could we at least have some guidance in UDS+ on what systems should do if a patient has a birth sex that is not M or F? I think the options are:

1. Don't include the patient in the UDS+ report at all. The downside here is that it will look like the FQHC is seeing fewer patients than they actually are, since HRSA will never know about the non-binary patients.
2. Always send "M" (or "F") for non-binary patients. This means HRSA will have an accurate count of the patients being seen, the birth sex will just be known to be incorrect for some unknown number of patients.