Open sarawilcox opened 4 years ago
This is one of the areas that we found that people needed more guidance on in our guidance on How to write good questions for forms #145.
There is already some good work being done elsewhere on this, for example, at Disclosure Scotland and at the Office for National Statistics.
See also GDS backlog: https://github.com/alphagov/govuk-design-system-backlog/issues/69#issuecomment-610303092
Current iteration of the question asking for user's sex on the NHS coronavius status checker
That is perfect. Any idea when it'll be rolled out to the live checker?
Thanks @Zeno001. For now, we've decided not to add it to the checker as the data is being captured in other ways. We'll continue to test this pattern in other services for the time being.
Sorry, are you referring to the coronavirus status checker? How is sex now being captured?
Summary of research carried out on the Coronavirus Status Checker service around how to ask for someone's sex
Disclosure Scotland Spoke to a former user researcher and content designers about how they asked people for their sex.
They said that asking questions around sex and gender can be very loaded and traumatising questions for some people. They recommended explaining up front what sort of questions would be asked and why; rather than springing it on people, it may be better to forewarn them.
You should explain why you are asking for the information; giving a good reason may convince some people to answer the question. Words like "we need to understand" are better than "we're interested in", and if asking for sex, you should explain as fully as possible what genetic or medical differences you might be talking about. Trans people may also answer with their current sex, rather than their sex at birth.
In their opinion, if you are making a strong case that someone needs to answer this question, adding a "prefer not to say" option may undermine this.
If you ask a gender question, note that a free text box may be used for anti-trans abuse. You should have the comms team lined up to deal with any such abuse that might come down on the team putting this together.
They recommended a simple question: "How do you identify? Male / Female / Another way". Do not use "unspecified" as an answer. There are potentially a lot of ways for someone to define their gender, and it is better to let someone tell you how they define themselves rather than provide all the set options.
Office for National Statistics Spoke to the topic lead for gender identity and sexual orientation.
The 2021 census team has done a lot of research into this area, and recommended to use their own approach. This involves asking a simple sex question (Male / Female) with an additional voluntary question for over-16s that gives the option to say if the person's gender is different from their sex registered at birth, and, if different, to record their gender, and include a "prefer not to say" option. They have conducted large-scale quant testing around "acceptability" of the question, and cognitive testing for "understanding".
The key issue is what data is actually required and why. This should be made clear to the users answering your question. You should give people a way to avoid the question.
Asking about "sex at birth" could bring up some problems. Trans people may feel that this is a private matter and that could potentially increase non-response rates.
Documents by ONS Update on Sex and GI (December 2018) - see section 4 on Gender Identity which covers the development of the overall approach for the 2021 Census and testing informing this. Census 2021 - list of all testing. 2019 Rehearsal questionnaire Government Statistical Service page on sex and gender Government Statistical Service Harmonised principles for demography
Yes, @Zeno001. We're not rolling out a question about sex in the coronavirus status checker for now because the data is being captured elsewhere. I don't know the details but I believe that the data analysts are collecting and analysing data from multiple sources. They've said that they're able to get the data they need without us adding a question about sex to the status checker. We're only asking for data we need to collect.
We know the effects of the coronavirus are highly sex-dependent so surely asking for the sex of the particular person you're gathering the other information on is vital?
From the ONS update December 2018
Thanks, Sara.
That's from the census, but why ask a question about gender identity in a survey on the effects of the coronavirus? You say you only ask for data you need, so what's the need here?
Thanks @Zeno001. We did some research around this, which we're documenting in case it's helpful to other teams. At one point it was suggested that we might need to include questions about sex and/or gender in the status checker. In the event, we're not including either.
Is the research published anywhere? But that seems an odd decision, given, as I said, we know of the sex-dependent effects (and no reason to suppose there would be any gender-specific effects).
As an illustration, the ONS list deaths involving coronavirus (COVID-19) by sex (ie male or female) only.
For example, see: Coronavirus (COVID-19) roundup - Office for National Statistics
These data show a clear sex bias. They do not mention 'gender' anywhere as it's irrelevant.
Similarly, Public Health England: Coronavirus (COVID-19) cases in the UK
Sex is important here: gender isn't.
We are currently doing more research into this issue across various services.
Worth considering whether you can get your system to do the hard work so you don't have to ask a question that might be a barrier for some users. See this blog post by @GrilloPress: https://grillopress.github.io/2019/03/18/do-the-hard-work-to-make-it-inclusive.html
How the ‘Sign up to be contacted for coronavirus vaccine studies’ service asked users for sex and gender:
Sex 'registered at birth' is just someone's sex so there's no need for the superfluous words. Just ask, "What is your sex? Female | male.
Gender is not equatable to sex (because the former is biological and the latter is a social construction relating to expectations, behaviours and attributes acquired through life) so it's unclear what the point is of stratifying participants by their 'gender', particularly since the question is essentially binary and I suspect not many will fill in the optional field. Will the write-in answers even be coded?
Sex 'registered at birth' is just someone's sex so there's no need for the superfluous words. Just ask, "What is your sex? Female | male.
What if the user was born intersex?
Intersex conditions are anomalous developments of dimorphic sexual classes[1] and are not a third sex class. Those with a Difference of Sex Development are still either male or female.
1 Gender incongruence in children, adolescents, and adults Susan Bewley, Damian Clifford, Margaret McCartney and Richard Byng British Journal of General Practice 2019; 69 (681): 170-171. DOI: https://doi.org/10.3399/bjgp19X701909
This was ranked 3rd from the in progress
group at the content backlog prioritisation workshop held on 24-Nov-2020
The 'Book a coronavirus vaccination' service is launching with the following screen after user research ad consultation with the LGBT health team. This screen works with a live API lookup and is being used for identity verification against PDS.
Two accompanying documents for the development of the screen above.
Designing inclusive services show and tell (1).pdf Matching patients to PDS without using gender_Paper.pdf
Male and female are sexes; non-binary is an identity, not a sex. This is a category error: the two should not be conflated.
If it is important to know the person's sex (perhaps because the dose is different for the two sexes for, say, efficacy or safety reasons), then you have to know the person's sex, not their 'identity'. If it is not required to know the person's sex, then why is this question being asked?
Does anyone know why this question is being asked and what data it is trying to gather?
The accompanying paper and show and tell deck posted below explains this use case in much more detail. It's being asked to match to PDS and identify someone's GP record (not collect data). We need to check against 'Make, Female, Unspecified and Unknown' as they are the only options offered. The screen has been developed in collaboration with the LGBT Health team and we are confident it is as inclusive as it can be given the current constraints we have.
This raises several issues:
It asks, "Which of the following best describes you?" but it doesn't even ask, "What is recorded by your GP?", so someone could easily give information that contradicts what their GP record shows, which would surely defeat the purpose of the question. If the data are being collected for the purposes of matching with a PDS record, why not say that and ask the right question?
Do I understand you correctly that PDS/GP records only have male, female, unspecified and unknown as options? If so, what mapping is done from 'non-binary'?
Do you agree there is a tension between gathering 'inclusive' data and gathering accurate data?
So the way the screen work is it will do 4x API calls against all 4 options held on PDS to ensure that we do find someone. We offer the option for people to state that what is held on their record may differ from how they self identify. This is one of the options that does the 4x API calls.
The accompanying documents posted go into detail about the decision making process and the screen was developed in close collaboration with the LBGT health team in NHSE/I.
There is still further work to do with regard to inclusivity yes, this work is ongoing however I'm confident the screen we have delivered is the most inclusive design we could deliver in the constraints we currently have.
@Zeno001 , thank you so much for engaging with this thread. It looks like you've got a lot of experience that will help us make this work a lot better.
Would you be open to meeting myself and some other members of the service manual team to talk through your thoughts? Thanks!
I really have no specific relevant experience here (although I have worked for a multinational company as R&D Manager running software and hardware projects in electronic security but never really touched much on UX) but I do have an interest in ensuring that the term sex is not conflated with other characteristics where any confusion between them has real-world implications that can cause unintentional harm or unintended discrimination.
If you think a chat would be useful to you, please let me know.
@Zeno001 that's absolutely fine. And yes, would be good to chat. Please feel free to email me at amy.james2@nhs.net and we can set up a meeting.
This new paper by Bewley et al. in the bmj is important and needs to be carefully considered:
Sex, gender, and medical data | The BMJ
Medical care requires an understanding of the difference between sex and gender categories; untangling them is crucial for safe, dignified, and effective healthcare of all groups. Avoidable harm may result when they are conflated—for example, if sex specific laboratory reference ranges are used for people whose gender is recorded but not their biological sex.7 -9 Furthermore, assuming that a patient’s recorded sex equals their gender creates problems for people who do not identify with socially constructed gender roles. Disaggregated data on sex and gender are necessary to ensure that public services are organised for the benefit of the whole population, not just the majority. Finally, confidentiality and respect for all groups are essential to ensure safety in reporting, and ensure that data are as accurate as possible and can be used to benefit all groups.[1]
Anyone using data primarily collected for another purpose, including clinical researchers using NHS or census datasets, needs to understand the original purpose and mode of data collection. Ambiguous data collection methods that conflate sex and gender risk erroneous research findings, poor service planning, and lower quality medical practice. Gender and sex should not be used interchangeably. We risk harming patients if we do not understand the difference.[1]
And this response to it provides a useful insight and background:
Sex, gender, and medical data: a way forward | The BMJ
1 Bewley S, McCartney M, Meads C, et al. Sex, gender, and medical data. BMJ 2021;372:n735. doi:10.1136/bmj.n735
Good Twitter thread here. Thanks @deanvipondNHS.
https://twitter.com/AlexPetrovnia/status/1417550024360304649?s=20
There are certainly a few sensible things in that thread, but most should be self-apparent from either a clinician (for whom sex is important) or a UK GDPR (only asking for personal information you need to know and have already established a lawful basis for processing) point of view.
The author is certainly correct that sex is not the same as 'gender'. However, I would take issue with a couple of points:
If you’re asking questions about uterine health, ask if your participant has a uterus, not for their gender. If you’re researching gender bias, ask about gender. If you simply need sex statistics, ask about sex. Think critically about what information you want.
'Gender bias' is usually sex bias and it is sex that is the protected characteristic under discrimination law, the Equality Act 2010.
According to Jo's Cervical Cancer Trust, Half of women don’t know what the cervix is. I suggest it will be much the same with uterus and asking about the term could well exclude a large proportion of women and girls. If it's important you know whether the individual is likely to have a uterus, ask about their sex: only those who are female have a uterus, cervix, etc.
One of the most common mistakes I see in this is listing “male” and “female” (and sometimes “intersex”) as genders. None of these are genders, all three of them are sex descriptors, and should only be used if you are asking a question about sex specifically.
Female and male are certainly the two sexes but intersex is not a sex or sex descriptor: Intersex describes conditions that are anomalous developments of dimorphic sexual classes.[1] They are a set of hormonal, chromosomal, etc medical conditions, not a sex.
So in conclusion, here’s the simplest possible options that I would recommend, when asking questions about sex and gender.
For sex, list options: male, female and intersex.
For gender, list options: man, woman, nonbinary (write in).
The problem here is that woman and man have legal definitions as the protected characteristic of sex under the Equality Act 2010. Section 212 defines:
“man” means a male of any age; “woman” means a female of any age.[2]
Using them as categories for 'gender' (which has no legal definition) can only cause confusion and wrong answers.
Oh! One more quick note: in general, sex when applied to humans is NOT a particularly helpful categorization. Overall, it’s best practice to avoid asking about sex (instead ask specific anatomy or physiology questions) altogether if possible.
This is a bizarre thing to say. Sex is a fundamentally useful categorisation: apart from having a legal meaning in terms of equality law, it is important in the assessment, diagnosis and treatment of patients. Getting it wrong by asking irrelevant or confusing questions could cost lives.
The author says:
Gender describes an individuals’ personal gender identity.
There may be a limited set of circumstances where a clinician might want to know how the patient feels about themselves, but it is far more likely that for the vast majority of patient encounters, it is sex that is important to know and having the wrong information causes harms.
Bewley S, Clifford D, McCartney M, et al. Gender incongruence in children, adolescents, and adults. Br J Gen Pract 2019;69:170–1. doi:10.3399/bjgp19X701909 https://bjgp.org/content/69/681/170
As part of the registration process for registering with a GP, users are asked on the current paper GMS1 form 'What is your gender' and given 2 options - Male or Female.
We are now looking to introduce a digital way of registering with a GP and of course, we want to ensure that the questions we ask are as inclusive as possible, but also ensure that we capture the right information to enable GP practices to locate the person's existing NHS record (where one already exists).
During discovery we cycled through a few different options, using examples here in this thread and using the research by the National Booking Service. Our service had to not only enable GPs to match to existing records where they can, but it also needs to ensure that patients are invited for screening.
The current iteration has our question set looking like this:
We have tested these pages with those of cis-gender, transgender and those who are non-binary. Feedback as follows: Overall:
Screenshot 1: Participant 5 (cis-gender)
Screenshot 2: Participant 5 (cis-gender)
Participant 2 (trans)
Participant 3 (trans)
Participant 12 (non-binary
Hope this is helpful, we still have work to do but I think that question 1 did made those trans and non-binary people feel comfortable in answering the question and that it was inclusive. There is still some work to do around effectively communicating why we need to know such information when registering with a GP and also explaining why a combination of question 1 and 2 could be required.
I've made many of the same points above but it's worth reiterating:
Intersex is not a sex or an identity. See Differences in sex development - NHS
Sex is not 'given' at birth as if it was in some way an arbitrary or capricious choice that was made at that time and/or is mutable. Female and male are the two sexes and the only two sexes. See Sex, gender and gender identity: a re-evaluation of the evidence | BJPsych Bulletin | Cambridge Core
Sex
Humans are sexually dimorphic: there are only two viable gametes and two sexes, whose primary and secondary sexual characteristics determine what role they play in human reproduction. Sex is determined at fertilisation and revealed at birth or, increasingly, in utero. The existence of rare and well-described ‘disorders (differences) of sexual differentiation’ does not negate the fact that sex is binary. The term ‘assigned at birth’ suggests a possibly arbitrary allocation by a health professional, rather than the observed product of sexual reproduction.
Sex is what is important for a doctor to know (for any number of safety, diagnostic and treatment reasons) and I believe it is the person's sex that is recorded in their medical records. Only those who are female need to be invited for cervical screening and only those who are male need to be invited for prostate screening. This is entirely independent of how they choose to 'identify'.
For further information on this important topic, please see Sex, gender, and medical data | The BMJ
'Gender', 'gender identity' and 'non-binary' are unhelpful terms as their meanings are not widely or consistently understood.
'Cisgender' is considered a derogatory and unhelpful term by many.
'Gender' and 'Gender identity' (whatever is meant by these terms) are not 'assigned at birth'.
Not everyone has a 'gender' or 'gender identity', but everyone has a sex.
Woman and man are the terms used in the Equality Act 2010 to refer to those who are of the female sex or the male sex so using these terms for 'gender' can only cause confusion. See s.11 Equality Act 2010 and s.212 Equality Act 2010
Your screens state "We do not discriminate on the grounds of gender", but discrimination under the Equality Act is on protected characteristics: 'gender' is not a protected characteristic but sex is. And it is sometimes entirely lawful - and indeed desirable and necessary - to discriminate on the grounds of sex. This includes the provision of single-sex wards and medical personnel of the same sex as the patient for some intimate procedures. If you need to state this, it should say something like "We do not unlawfully discriminate on the grounds of sex", but this would be a matter for lawyers.
Some questions that I think need to be answered:
Why isn't the sex (female or male) of the person being asked for?
What are the harms that will be caused by wrongly recording an individual's sex?
What impact analysis has been done if a question on 'gender' or 'gender identity' is asked instead?
What proportion of those who are trans don't know and understand what sex they are?
What value is there from asking for and recording answers to a question on 'gender' or 'gender identity'?
Thanks @zeno001 lots of good points raised - as stated, we are in the early stages of this work and it is a prototype that we are testing continually, however, I think these were important points to share with the wider community in the essence of working in the open. This is why we do user research.
Please be assured that we're not working in isolation on this, we are working with a lot of the same people that Emma and their team worked with. The recording of gender on NHS records is not a simple thing and as Emma has previously posted, this has not changed, and therefore we need to ask questions in a way that allows us to make a match on PDS, as well as consider any other services someone may need.
I'm not sure if you ever had the change to speak to @amyj2110 and the wider team but I will check in and see if there's any learnings we can take from those conversations. I do think that the participants we had some great feedback and some clear points to work on too, which we will of course be doing.
Amy and I had a brief email conversation but she never got back to me about suitable dates and times for a meeting.
This issue is an epic on the service manual team's roadmap.
Recent comments on GOV.UK gender or sex issue: https://github.com/alphagov/govuk-design-system-backlog/issues/69#issuecomment-1063154711
A personal blog post about the question about sex and the national coronavirus vaccination booking service. Let's talk about sex by Emma Parnell on Medium.
On 111 Online, users have to answer some mandatory demographic questions - age, location, sex at birth - before they can then start to answer triage questions about their symptom. The binary answers of Male/Female on the ‘sex at birth’ question is determined by how Pathways, the triage system underlying our service, is classified.
We’ve received a lot of live feedback from users have said that the ‘sex at birth’ question (screenshot below) is difficult to answer and/or often distressing. We have since conducted 2 rounds of discovery research with 15 trans and gender non-conforming users to better understand their experiences and needs around sex and gender. The first round was solely interview-based while the second was a mix of an interview and showing some initial design ideas.
We tested 3 triage journey ideas with users:
Note: The gender question was directly used from the version tested by the 'book a coronavirus vaccination' national service (before it was later removed as the PDS API matching algorithm was updated)
Interview feedback on the current ‘sex at birth’ question (above):
Collation of findings from Idea 1 ('sex at birth' question followed by gender identity question - above screenshot) and Idea 2 (No 'sex at birth' question but gender identity asked at point of referral):
Emma Parnell's blog post from 2021: Let's talk about sex*
That's a confusing blog post, @sarawilcox. Can you say why you re-posted it and what you think it brings to the discussion?
This is interesting: Trans patients who change sex in medical records face ‘unintended negative consequences’
‘Unintended negative consequences’ The SNP government ordered a review of their records management policy for health and social care, with a draft of the new guidelines sent out to NHS staff for consultation in December.
The proposed update states that the long-standing trans policy, in place for at least the last decade, could have “unintended negative consequences to [a patient’s] overall health where they have chosen a name and gender identity that differs from their current legally designated name and sex assigned to them at birth.”
It adds: “Decisions based on, for example test results, can differ between those with chromosome XX and those with chromosome XY due to the physiological and biological differences.
“Therefore there could be a clinical risk if the biological sex is not known by the clinician, as treatment may be required to be based on the patient’s sex at birth instead of their gender identity.”
The draft guidance calls for patients to be made aware of the dangers when requesting a change to their sex in health records, which was absent from the previous version of the policy.
Those who change their sex in medical records are also not always automatically called for relevant cancer screening programmes, such as breast and cervical screening for biological women who identify as male.
More on the harms of not recording the sex of patients - regardless of their 'gender identity':
Thousands of transgender patients in England are missing out on vital cancer screening because of the way their GP records are drawn up, experts have warned.
Everyone registered as female with their GP is automatically invited to breast screening from the age of 50 to 70, and to regular cervical screenings from 25 to 64.
But warnings from experts at the World Cancer Congress in Geneva this week, underscored by official NHS guidance, show that many trans patients are not invited to undergo the tests.
In England, trans men who were registered female at birth and have changed the gender on their patient record to male are not offered breast or cervical screening, regardless of whether they have had chest reconstruction or a hysterectomy.
Trans women who are still registered male with their GP are also not offered routine breast screening, even if they have been on longterm hormone therapy, which puts them at added risk of breast cancer.
Experts say the problem is the way GP electronic records in England are updated when patients change their gender.
What
Use this issue to discuss when and how to ask about people's gender and sex.
Related info
GOV.UK Design System's gender or sex backlog issue