Gender Data Gaps in Health

Kathleen_Hamrick

Which areas of health present the greatest gender data gaps?

ingmarweber

This sound closely related to the 100 Questions Initiative by the NYU Govlab with Stefaan Verhulst and colleagues. That initiative tries to identify a set of high impact questions that non-traditional data and new computational approaches might be able to address. See https://gender.the100questions.org/ for some details. The "gender" cohort, that I'm a part of, is currently grouping questions before public voting. Several of the groups are related to gender and health. If you're not already connected with them then I'd be happy to introduce you. Just let me know who would be the appropriate representative.

Shashi

Hi @aakanksha_k, @bishwa, @clddrd, @selindilli, @lepri, @JCConti, We would love to hear your thoughts on the areas of health with most gender data gap.

aakanksha_k

In the population of urban slums, the following are the areas of health where we have observed a gender data gap:
1. Family planning: access to birth control, agency to use birth control, religious beliefs that are deterrents to using birth control.
2. Birth Spacing
3. Regarding disenfranchised communities: access to hygiene, sanitation and health services, coupled with the other burdens of homelessness.
4. Longevity in urban slums: there is almost no data regarding women and other vulnerable genders and populations.
5. "No people": for instance, the government data states that the population of Shivaji Nagar, a highly deprived community living around the dumping ground in Mumbai, is around 2 lakh, but is in fact approximately 4 lakh. This, is a major gap in data, mostly concerning women.
6. Data from women belonging to religious minorities: linkage between access to education, health indicators and overall agency of women is not available.
Do let me know if this seems relevant to the discussion!
Thanks!

Shashi

Thank you @ingmarweber, and @aakanksha_k, for your insightful perspective. Aakanksha your inputs are highly relevant to our research; please keep contributing.

I would also like to draw your attention towards Kathleen's recent discussion on emerging technology to close gender data gaps in health. Do you'll have any insight on this question for us? if yes; please share it with the community here https://community.xprize.org/discussion/673/emerging-technologies-to-close-gender-data-gaps-in-health#latest

Kathleen_Hamrick

@aakanksha_k thank you for sharing these insights with the team! Can you provide a bit more information to us with regards to #2: Birth Spacing?

For #5, we would love to hear your thoughts as to how technology might help with documenting actual population numbers in urban slums.

aakanksha_k wrote: »

In the population of urban slums, the following are the areas of health where we have observed a gender data gap:
1. Family planning: access to birth control, agency to use birth control, religious beliefs that are deterrents to using birth control.
2. Birth Spacing
3. Regarding disenfranchised communities: access to hygiene, sanitation and health services, coupled with the other burdens of homelessness.
4. Longevity in urban slums: there is almost no data regarding women and other vulnerable genders and populations.
5. "No people": for instance, the government data states that the population of Shivaji Nagar, a highly deprived community living around the dumping ground in Mumbai, is around 2 lakh, but is in fact approximately 4 lakh. This, is a major gap in data, mostly concerning women.
6. Data from women belonging to religious minorities: linkage between access to education, health indicators and overall agency of women is not available.
Do let me know if this seems relevant to the discussion!
Thanks!

Hanadibader

in the context where I am working in, environmental-related health and public health have the greatest missing data and the large gender gap, data is not gendered or even sex-segregated, the need for correct realistic measuring is a must

Kathleen_Hamrick

@Hanadibader thank you for providing this perspective here with regards to the need to ensure consistency of data collection between domains, such as environment and health.

Hanadibader wrote: »

in the context where I am working in, environmental-related health and public health have the greatest missing data and the large gender gap, data is not gendered or even sex-segregated, the need for correct realistic measuring is a must

Can you provide us with an illustration of this from your experience in the field?

yasmeenhassan1

Responding to need for data on FGM -- we just launched a global report: https://d3n8a8pro7vhmx.cloudfront.net/equalitynow/pages/2280/attachments/original/1584098209/FGM_Global_-_ONLINE_PDF_VERSION_-_06.pdf?1584098209

Shashi

Copy pasting @farah comment sent via direct message.
"Basic registries don't exist in many regions so in one of my areas, Maternal mortality, we don't have any data at all."

Farah is based out of canada.

Shashi

Thanks @JessicaRoland for sharing the top 10 areas with highest gender data gap in health. It would be helpful to understand why these areas have been most problematic. If possible, please share your thoughts on it.

Thanks @yasmeenhassan1 for sharing the highly insightful report on data gaps in FGM.

Thanks @farah for sharing the important fact on maternal mortality. Are there any actions taken to close this data gaps.

Shashi

Hi @JvCabiness, @Fatima, @Lyndall, @bwilcher,
Given your background and experience, I feel you may be able to throw some light on why the areas mentioned by Jessica are most problematic.

Thanks.

ÅsaEkvall

I agree with the top 10 ten list but I'd like to add another item (top 11 then).
Women's pain is largely ignored even when debilitating. Painful periods, endometriosis, myomas, prolapses, pain during intercourse etc - things that don't happen to men. This affect the quality of life of millions of women around the world and is very little researched.

Shashi

Thanks @ÅsaEkvall for sharing this important perspective. Is there any steps taken to fill these research gaps?

ÅsaEkvall

@Shashi we just discussed in another group that there is almost no funding for research on these issues.

WD_Research

Thank you @JessicaRoland for sharing these top 10 data gaps on behalf of Women Deliver. Here are some examples as to why collecting some of this data has been problematic:

-Lack of strong civil registration and vital statistics systems, and problems with measurements (definition of what counts or doesn’t count as a maternal mortality) has historically led to inaccurate maternal mortality ratios.
-Cultural biases and harmful gender norms including the belief that unmarried women should not be sexually active, or that young adolescents (ages 10-15) are not sexually active, has led to biases in questionnaire development that only ask sexual and reproductive health questions to married women of reproductive ages 15-49
-Similarly, a disregard for sexual needs of older populations (e.g. STI among elderly) because the focus has been on “reproduction” in the past
-While good estimates of rates of unsafe abortions exist, abortion continues to be legally restricted in many countries making comprehensive data collection difficult
-The challenges with collecting data on sexual violence are more widely documented, including under reporting due to fear of repercussion
- While the humanitarian community continues to improve its data collection, there remains certain challenges as research continues to be underfunded and deprioritized. In addition to funding, there is a need to streamline and simplify data systems, which, at times, are parallel and complicated and add more work or contradict each other. More efforts are also needed to build capacity of staff on methods and systems of data collection.

Adding a few additional important gender gaps in health:
• Lack of inclusion of women in clinical trials (also discussed in the COVID-19 thread)
• Lack of data on implementation on health-related laws
• Gender-sensitive health systems and training for health workers
• Gaps around mental health (i.e., prevalence, access to services, etc)
• Knowledge gaps around the intersection of health and other issue topics: e.g., how sexual and reproductive health initiatives can help mitigate climate change? What are the impacts of women’s political participation in ending gender-based violence and sexual harassment? What are the societal and economic gains of ensuring women have their sexual and reproductive health and rights respected in the workplace? Etc.

Aaron_Denham

These are great and support much of what we are finding in our literature reviews and expert interviews. Many thanks! Whenever we start out with a question examining what are the most significant health issues related to gender data gaps, for example, the answers soon become intersectional and are deeply connected to other life domains and social determinants (many of which are listed above). One challenge will be finding ways to connect these domains in data systems.

stellunak

Hi, everyone! You can take a look at this newsletter by the NYT, about the absence of desegregated COVID-19 data.

https://messaging-custom-newsletters.nytimes.com/template/oakv2?campaign_id=10&emc=edit_gn_20200403&instance_id=17318&nl=in-her-words&productCode=GN&regi_id=87369920&segment_id=23776&te=1&uri=nyt://newsletter/edbe9f26-4eb5-47e2-9ecf-ab6af2198102&user_id=94a99debaaf79647ab26a78088a9bb7b

sadiew

Hi, for illnesses that predominantly impact women (fibromyalgia, chronic lyme, ME/CFS, migraine) there is a problem with women being taken seriously, and in some cases being told they are imagining their symptoms; the time to diagnosis is long (some women never get a diagnosis); and there is little data collected

Vrabec

Menopause. There is a lack of awareness and research as compared to aging men's health issues.

Shashi

Thanks @sadiew and @Vrabec for your inputs. We will be incorporating it in our research.

Aaron_Denham

@Vrabec Yes. There is so little attention to women in the 49+ age range within the global health data and practice space. It seems as if women cease to exist after their childbearing years. This is one space where gender + age result in an even greater data gap.

Kathleen_Hamrick

@stellunak thank you for sharing this with us — it was extremely informative and points to the importance of understanding the biological differences between genders.

stellunak wrote: »

Hi, everyone! You can take a look at this newsletter by the NYT, about the absence of desegregated COVID-19 data.

https://messaging-custom-newsletters.nytimes.com/template/oakv2?campaign_id=10&emc=edit_gn_20200403&instance_id=17318&nl=in-her-words&productCode=GN&regi_id=87369920&segment_id=23776&te=1&uri=nyt://newsletter/edbe9f26-4eb5-47e2-9ecf-ab6af2198102&user_id=94a99debaaf79647ab26a78088a9bb7b

pepsicola28

What exactly is the question? If we are asking about gender gaps, are we saying where is there more info on men vs. women for the *same* health issue? Or are we asking about overall health and therefore health issues unique to women that get less attention? Answering the latter, I would say let’s look at sexual health. Viagra was created long ago for men to be able to have sex. While this is important in ensuring a healthy sex life and sense of manhood, only now are we starting to look at women’s sexual health as important -- and slowly covering treatments with insurance as medically necessary. For example, as someone mentioned, pain with sex (e.g., vulvodynia) or vulvar pain simply with sitting or riding a bike is still inadequately researched and often lumped in with funding for things like migraine. While this is a start, it deserves it's own funding and spotlight. This pain not only impacts a woman's sense of self and sexuality and ability to maintain an intimate relationship, but can make it hard to keep a job -- if it requires sitting. This affects up to 15% of women and yet is not well funded.

I remember reading about a comparison to heart attacks -- as if heart attacks are more critical given a heart attack is an acute issue and could take a parent from their kids. While I don't see this as apples to apples, there's still an underlying judgment -- that ensuring someone who has lived a full life is able to still do so (even if they may have eaten their way to clogged arteries), while condemning a woman to 1) solitude or depression from fear of or pain with sex and 2) a lack of productivity from a truncated career because it hurts to sit. Plus, decades spent on opioids and antidepressants not only costs a lot just like a triple bypass but costs us all in terms of lost productivity. We need to dig in there and make that business case.

Plus we are throwing the kitchen sink at pelvic pain right now -- we need better treatment. "Vulvodynia" means pain in the vulvar region, but how is that a "diagnosis"? If you say your foot hurts, the *reason* is diagnosed -- maybe a bone is broken, maybe there's a plantar's wart, maybe you have frost bite. "Pain in the foot" is not a diagnosis; neither is pain in the vulva. We must do better for something that affects a woman's ability to have relationships, have a family, have a job... Some of the biggest things we live for.

Shashi

Thanks @pepsicola28 for sharing your thoughts. All valid and good points. XPRIZE Identified that Mental Health and Adolescent Sexual and Reproductive Health as areas which are most overlooked.

In case if you have come across any organization working in this field or any program that's trying to reduce gender data gaps in these areas, please share it with us. At present we are not only looking at how we can collect gender data relating to mental health but also how we could capture the diversity of local mental health experiences.

shihei

Dear all, related to the topic of gender data gap, we are organising a virtual discussion tomorrow, please join: https://www.gendro.org/events

Also, join our call for action and endorse our statement on the importance of collection and reporting of gender data:
https://www.gendro.org/statements

Shashi

Thanks @shihei for sharing details of the webinar. I look forward to gain more insights on gender data gap.