Considering Equity within Risk Factor Data

I’m working as a Hepatitis C Epidemiologist at the WI DHS alongside other infectious disease programs. Something that has been increasingly discussed in our programs is how to present our data with equity when we’re displaying data based on risk factors and certain behaviors, specifically MSM, LGBTQ, and people who inject drugs.

With these communities that are already stigmatized, how can we display their data in a way that doesn’t further stigmatize them with such risk factors? Would love to have this conversation with this group and determine if other infection disease or surveillance epis have any thoughts. Thanks for your help!


LOVE this question @Kelsa_Lowe , and I think there’s a lot to unpack here. First of all, I am NOT a health or Hep C expert in any way, so please forgive me (and correct me!) if I say something silly. I’m going to add my thoughts here - please let me know which parts of this are helpful and which parts are off base. I’m also going to flag this for some of the folks on this forum with direct experience to see if they can add their ideas.

One quick question I have is how much if any, control your organization has over what type of people characteristics data you collect in the surveillance data. That will make a difference in some of the follow-up answers.


I think there are a bunch of interesting choices to be made here. One is around what categories like LGTBQ+ or MSM are proxies for in relation to Hep C. Sometimes it’s important that we talk about categories of people, (like “Gay Men”) and othertimes we are using those categories as proxies for something like a behavior, or a bundle of behaviors (like “participating in anal sex”). Sometimes identities are a good and easily supported proxy, sometimes they aren’t.

When we’re talking about something like Hep C we don’t want to leave a big gap for people to fill with assumptions about why or for what reason we’re talking about a group of people.

If we take a look at this fact sheet from the CDC, we see lots of references to a type of person (Gay and Bisexual Men). Note: There are some clarity issues with this in a few places, like maybe implying that needle sharing is linked to sexual orientation (which I don’t think they meant to imply, just that it’s a “high risk behavior”).

Whereas this site talks about behavior-based risk factors without even one mention of any type of identity, describing only the behaviors themselves.

Now, I’m not saying that one of these is automatically better than the other, but they have a very different message. If you do want to talk about groups of people instead of behaviors - maybe because that’s the data you have, or because that’s what you want to talk about - I applaud your concern about adding to stigma.


Any time that we have a problem that is disproportionately being experienced by a group of people, it is really easy to accidentally blame those people for that problem, or leave a huge hole of ambiguity that people can fill with their biases and prejudices. The headlines “Black students most likely to fail literacy test” and “literacy program most ineffective for Black students” might be addressing the same issue, but the hole it leaves for misinterpretation is completely different. We do want to talk about people (in this case Black students, or maybe in your case men who have sex with men), but how we do it matters.

It wasn’t that long ago (1982 in fact) that this article came out in the NYTs

And at that early stage, the media and many researchers were calling AIDS G.R.I.D. or gay-related immunodeficiency, a label the author was comfortable with despite including in the very same report:

"Thirteen of those affected have been heterosexual women. Some male victims are believed to have been heterosexual, and to have been chiefly users of heroin and other drugs by injection into their veins. "

When it comes to data around disease, I think it’s really important to emphasize that the problem is the disease, not the people that are suffering from it. We’re all humans and some of us are being attacked by this thing, we should mobilize resources to help them. This can be done with careful language, graphic, and symbol choices and I’d love to see what people working on this type of thing are doing.


Another thing that’s tricky is the difference in specificity between things like:

MSM is a set of behaviors, I think only some of which are related to HEP C, LGTBQ is a bundle of sexual orientation and gender expressions identities (i.e. categories of people rather than behaviors) with a really wide range of risk factors for HEP C, and then the really specific “people who inject drugs” which I really like as it puts the emphasis on the risk and the specific type of risk rather than say “drug users”, where only some of them might be at risk depending on what drugs they use and how. It can be helpful to make sure the categories you use (especially around something as personally relevant as risk factors for a disease) are at the level of specificity you want to avoid prejudice against types of people rather than the risk associated with certain behaviors.

You definitely brought up some very good points! Unfortunately, CDC doesn’t do a great job with modernizing their language. For example, transitioning to pregnant persons, chest and breast feeding, etc. isn’t something they’re currently doing. Similarly, there could be issues with designating specific people at risk, rather than behaviors - so those who engage in X or MSM is better language compared to gay/bisexual, etc. It’s great to have resources designed for various populations, but that’s about the extent to which I would label something. Per the ‘types of categories’ section you mentioned: we try to collect ‘risk factor/exposure’ data including: injection drug use, incarceration, unstable housing, sexual history etc. I wish I could demonstrate more qualitative data into this story and/or describe traumas that led to exposures, so that people can’t make judgements against behaviors, as well. It’s a tough situation! Really just looking to represent these folks in the most un-stigmatizing manner as possible. Thanks for all you do!

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