Circulating health narratives impact the health system, not just communities

When I worked on analysis of circulating narratives and infodemic insights in support of the 2022 global mpox outbreak response, the weekly analysis very quickly started picking up discussions by and about cis-gender women being misdiagnosed and not having access to mpox treatment. These questions, concerns and narratives kept circulating and were left unaddressed.

When I discussed our findings with epidemiologists and RCCE colleagues, they collectively shrugged, suggesting it's a waste of time to focus on women in context of mpox response ("because they're such a small proportion of cases").

Despite the fact that women reported being misdiagnosed and clinicians admitting that they weren't expecting to diagnose mpox in cis-gender women, nothing was done to take action on either what needs to be said or what needs to be done.

As a queer woman, it concerned me when I spoke to colleagues who said that they consulted "the gay community" on mpox messages when it was clear that they had limited experience and understanding of the larger LGBTQI+ community and its relationship to health and sexually transmitted disease.

Things went even so far that official communication and awareness campaigns continued to only mention MSM (men who have sex with men) as a population especially at risk of transmission and infection.

Essentially, individual women's experiences and experiences of some health workers were dismissed as less relevant.

The down side to this is that similar to how the general public might be exposed to and perpetuate specific health narratives, the same can happen to health workers and public health professionals.

However, diseases evolve, evidence changes, new populations are affected. Believing existing narratives requires dismissing new information. When that happens to people in the health system, it can mean that patients' concerns and new presentation of disease are dismissed and missed.

In the queer community, this is an old song. We. Have. Been. Here. Before.

Months after my conversations that we need to act on the concerns reported by women, studies reported that mpox cases among women were left undiagnosed, and as much as a third of infections among women were misdiagnosed as sexually transmitted diseases.

Could we have done something differently had we taken the signals from communities more seriously earlier on?

Could we have provided updated guidance to healthcare providers who might have been able to detect and treat mpox cases in patients that weren't MSM because they were looking out for it?

The reason that we need to do a better job of understanding circulating health narratives, what is being expressed, about who, by whom, and in what contexts, and how the narratives change over time is because the diseases and health conditions they're about also change.

When you're too eager to whack-a-mole each health communication problem as it emerges without seeing the bigger picture, you may be missing the actual bigger picture.