WSIS Forum 2026
AI-generated report

Fit for Whom?

10 speakers
Summary

This discussion, moderated by Caitlin Kraft-Buchman of Women at the Table, focused on the systemic exclusion of women from medical research and data, and the compounding effect this has as artificial intelligence is built upon this flawed foundation. Panellists Oriana Kraft of FemmeTechnology.org and Yu Ping Chan of UNDP explore how gender bias is embedded at every layer of the healthcare and technology stack.

Oriana Kraft outlined the scale of the problem in medicine, noting that there are sex differences in every single cell in the human body, yet research has historically focused almost exclusively on male subjects . Male animals outnumber female animals in studies by five-and-a-half to one, based on a false assumption that female hormonal cycles make them too unpredictable . The consequences are severe: women are diagnosed on average four years later than men across 770 diseases , are 50% more likely to die following a heart attack , and are 50-75% more likely to experience adverse drug reactions . Conditions such as endometriosis take an average of seven years to diagnose, and women must see five physicians on average before receiving an accurate diagnosis, meaning inaccurate records accumulate in medical databases .

When AI models are trained on this biased historical data, diagnostic accuracy is reduced by 11.3% , and the problem is further compounded by the use of synthetic data, which progressively erases signals relating to women's health at the margins of data distributions . Yu Ping Chan added that a UNDP survey of 80 countries found that close to 90% of both men and women hold at least one bias against women, meaning the very substrate on which digital systems are built is already skewed . She warned that a 10-15% global gender gap in internet connectivity, rising to 30-40% in developing countries, means that continued digital transformation without addressing these biases will worsen inequalities .

Proposed solutions included calling for representativeness as a scientific standard in data collection , embedding gender-disaggregated data requirements into government procurement contracts , and incentivising both female physicians and patients to contribute richer, more nuanced health data . Kraft-Buchman also suggested training women's rights groups to become data collectors and owners, enabling them to sell that data back to markets that currently lack it . An audience member from Tanzania highlighted that research grounded in diverse female populations could unlock important discoveries, such as why certain communities experience fewer menopausal symptoms .

The discussion concluded with a shared sense of urgency and frustration that awareness has not translated into sufficient action , with panellists calling for political accountability, clearer international standards, and the use of existing frameworks such as WSIS e-health indicators to drive gender-representative data practices . The overarching message was that correcting these deep-rooted biases requires coordinated commitment from governments, the private sector, and international organisations before further digital infrastructure is built upon an already unequal foundation .

Keypoints
  • Major Discussion Points

  • Gender bias in medical research and AI healthcare models: The panel highlighted that medical research has historically been conducted almost exclusively on male subjects, leading to systemic gaps in women's healthcare. This bias is then compounded when AI models are trained on this flawed data. For example, troponin thresholds calibrated on men miss 42% of female heart attacks , women are diagnosed on average four years later than men across 770 diseases , and AI trained on misrepresentative data reduces diagnostic accuracy by 11.3% . The "cascade of distortion" - from preclinical research through clinical guidelines to AI models - was described in detail , with male animals outnumbering female animals 5.5 to one in studies .
  • The need for richer, sex-disaggregated and life-stage data collection: A central theme was the absence of data capturing uniquely female biological experiences. There are currently no standard forms in healthcare or HR systems to capture menopause, the menstrual cycle, or postpartum experiences . Speakers argued that female life stages interact with every organ in the body and that capturing this information - including from patients themselves via wearables and cycle logs - could be transformative . Female physician notes were found to be twice as detailed as male physicians', suggesting incentivising nuanced data capture as one practical step .
  • Hardwiring gender bias into digital public infrastructure: Yu Ping Chan raised the concern that as digital public infrastructure is built, it risks encoding existing societal biases. A UNDP Gender Social Norms Index found that close to 90% of men and 87% of women hold at least one bias against women, and there has been a decade of stagnation in progress . Combined with a 10-15% digital gender gap in connectivity globally - rising to 30-40% in developing countries - the panel warned that continued digital transformation without addressing these biases will worsen inequalities .
  • Translating commitments into concrete action - standards, procurement, and accountability: The discussion grappled with how to move beyond declarations and documents towards real change. The Hamburg Declaration on responsible AI for the SDGs was cited as an example of a multi-stakeholder commitment that includes gender as a priority area , but speakers acknowledged the difficulty of turning paper commitments into action . Proposed mechanisms included establishing representativeness as a scientific standard , embedding gender-disaggregated data requirements into government procurement contracts , and using WSIS e-health indicators to encourage gender-representative training data .
  • Empowering women as data producers and advocates for change: Rather than framing women solely as recipients of technology, the panel advocated for positioning women as data collectors, owners, and producers . Speakers suggested training women's rights groups to collect and manage data, and noted that women in FemTech contexts are already willing to donate their data to advance women's healthcare . The panel also called for political accountability, arguing that women's health should feature in electoral platforms and that lobbying efforts and celebrity advocacy have already begun to shift public awareness .
  • --
  • Overall Purpose

  • The discussion aimed to expose the systemic exclusion of women from medical research and AI training data, illustrate the real-world health consequences of this exclusion, and explore practical pathways - including data standards, procurement policy, political advocacy, and grassroots data collection - to correct these imbalances before they become further entrenched in emerging digital and AI infrastructure.
  • --
  • Overall Tone

  • The tone was predominantly urgent and concerned, reflecting the seriousness of the health disparities described. Oriana Kraft's detailed presentation of the "cascade of distortion" carried a sobering, evidence-driven quality. The tone shifted towards cautious optimism in the latter stages, particularly when speakers discussed the potential for leapfrog innovation in the Global South , the scientific opportunity represented by untapped women's health data , and the idea of a "health data race" among nations . Audience contributions - particularly from women sharing personal and cultural experiences from Tanzania and China - added a grounded, human dimension that reinforced the panel's sense of collective purpose.
Speakers Overview
OK
Oriana Kraft
184 wpm · 14 min
CK
Caitlin Kraft-Buchman
139 wpm · 8 min
YP
Yu Ping Chan
196 wpm · 7 min
S1
Speaker 1
191 wpm · 10 min
AM
Audience Member 1
157 wpm · 42 s
AM
Audience Member 2
117 wpm · 2 min
Y
Yipeng
195 wpm · 1 min
S2
Speaker 2
153 wpm · 6 min
AM
Audience Member 3
157 wpm · 54 s
AM
Audience Member 4
96 wpm · 1 min

Expanded Summary: Gender Bias in Medical Research, AI Healthcare Models, and Digital Public Infrastructure

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Introduction and Context

The session was moderated by Caitlin Kraft-Buchman of Women at the Table and brought together Oriana Kraft, founder of FemmeTechnology.org, and Yu Ping Chan of UNDP . It is worth noting that Ambassador Kha had originally been scheduled to participate but was called away to moderate another panel, with his staff simultaneously engaged at the Human Rights Council negotiating a settlement; Kraft-Buchman noted that the panel would carry forward his work on representativeness in data. The discussion took place against a backdrop of growing concern about the deployment of artificial intelligence in high-risk settings - including hospitals, courtrooms, and financial systems - where decisions about who receives a diagnosis, a loan, or legal redress are increasingly shaped by algorithmic systems . Kraft-Buchman opened by observing that machine learning operates on averages and recursive self-learning, meaning that populations furthest from the privileged centre - including women, rural communities, and disabled people - are progressively erased from model outputs as the technology develops . This framing established the session's central argument: that gender bias is not merely a social problem but a structural feature of how AI systems are built, and one with profound real-world consequences.

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The Cascade of Distortion: Gender Bias in Medical Research

Oriana Kraft provided the session's empirical foundation, presenting what she described as a "cascade of distortion" running from preclinical research through clinical guidelines to AI model training . She began with a foundational scientific observation that is widely underappreciated: there are sex differences in every single cell in the human body, meaning that the way every organ functions differs between men and women . Despite this, medical research has historically been conducted almost exclusively on male subjects - male cells, male animals, and male bodies . Male animals outnumber female animals in research studies at a ratio of 5.5 to one, a disparity rooted in a demonstrably false assumption that female hormonal cycles make female subjects too unpredictable . In reality, Kraft noted, male mice with testosterone fluctuations are less predictable than female mice, whose cycles at least follow a known pattern . The exclusion of female subjects was therefore not merely a value judgement but a scientific error.

The consequences of this exclusion are severe and well-documented. Women are diagnosed on average four years later than men across 770 diseases , are 50% more likely to die following a heart attack , and are 50-75% more likely to experience adverse drug reactions, largely because they were effectively banned from clinical trials until 1993 . Diagnostic tools have been calibrated on male physiology: troponin thresholds used to detect cardiovascular disease are set at levels appropriate for the male body and are too high for women, causing 42% of female heart attacks to be missed . Imaging technology is similarly designed around the vessels more commonly affected in men, meaning that female cardiovascular presentations are systematically overlooked at multiple points in the diagnostic process . Once diagnosed, women are less likely to be prescribed gold-standard treatment, and even those treatments have been found to be less effective in women - as Kraft noted was demonstrated by what she described as the REBOOT trial, which she recalled had come out approximately two years prior .

The misdiagnosis problem is compounded by the accumulation of inaccurate records in medical databases. Conditions such as endometriosis take an average of seven years to diagnose, and women must see an average of five physicians before receiving an accurate diagnosis . Each physician seen before the correct diagnosis records an inaccurate one, and unless a patient is in a country such as Denmark - which has invested in large-scale linked health registries - those inaccurate records are never updated . The result is a body of medical data that is not merely incomplete but actively misleading, and it is on this foundation that AI health models are being trained .

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The Compounding Effect of AI Training on Biased Data

Kraft was direct in addressing a common assumption in AI ethics: that explainable AI - systems designed to articulate their reasoning - can compensate for biased training data. The evidence does not support this. Kraft cited figures indicating that AI trained on misrepresentative medical data reduces diagnostic accuracy by 11.3%, and that this reduction persists even when physicians use explainable AI systems . The only genuine solution is accurate, representative data at the point of training. The problem is further compounded by the increasing use of synthetic data, which major AI companies have turned to as they report running out of fresh human data . Each time a model is retrained on synthetic data, signals from the tail ends of distributions - where women, as an underrepresented group, are disproportionately located - are progressively erased . Women are not rare in reality, but they are rare in the representation of data, and this gap widens with every model iteration .

Kraft-Buchman reinforced this point by noting that de-biasing existing datasets is not a genuine solution: it can mitigate harm but cannot resolve the underlying problem . The implication is that the field must move towards building new, representative datasets and sector-specific AI models from scratch, rather than attempting to correct large language models that have already absorbed decades of skewed data . This view was echoed in the observation that sovereign AI trends and geopolitical pressures are already pushing countries towards smaller, sector-specific language models, which may create an opportunity to build health AI on a more representative foundation .

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Hardwiring Gender Bias into Digital Public Infrastructure

Yu Ping Chan broadened the discussion from healthcare-specific data to the wider challenge of building digital public infrastructure on a biased substrate. She cited UNDP's Gender Social Norms Index, which surveyed 80 countries representing 85% of the global population, and found that close to 9 in 10 people - 90% of men and 87% of women - hold at least one bias against women, with a decade of stagnation in progress on this measure . This means that the data feeding AI models is not merely technically incomplete but socially skewed, encoding unconscious assumptions about gender roles and capabilities that have been stable for a generation.

Chan warned that a 10-15% global gender gap in connectivity and internet use - rising to 30-40% in developing countries - means that women are already underrepresented in the data that feeds digital systems . As digital public infrastructure continues to expand without addressing these biases, the inequalities are not merely preserved but hardwired and worsened . She acknowledged that the tech sector has historically resisted quotas and firm regulations, and that she was genuinely unsure what the fix is . This candour foreclosed easy reassurance and opened space for a more honest exploration of mechanisms.

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Missing Data: Female Life Stages and Patient-Generated Information

A central theme of the discussion was the near-total absence of data capturing uniquely female biological experiences. Kraft noted that there is no standard form in healthcare or HR systems to capture whether a woman is going through menopause, experiencing menstrual cycle changes, or in a postpartum period . This is not a minor omission: female life stages interact with every organ in the body, and conditions such as preeclampsia and gestational diabetes increase lifetime cardiovascular disease risk by two to four times . Without systematic capture of this information, it is impossible to monitor women appropriately or to conduct early detection that could reduce downstream comorbidities and save lives .

The menstrual cycle itself contains clinically significant signals that current instruments are not designed to capture. A woman's immune profile changes throughout the cycle, affecting vaccination response rates, adverse drug reactions, and even chemotherapy outcomes . These are not marginal effects but potentially transformative ones, yet the data infrastructure to capture them does not exist in any systematic form . Meanwhile, women are already generating rich health data through wearables, cycle logs, and detailed personal notes, and are bringing this information to physician appointments - where it is largely dismissed . Femtech startups have found that women are willing to donate their data simply to have better care and to contribute to advancing women's healthcare as a whole . The irony, as Kraft observed, is that this willingness exists precisely at the moment when major AI companies report having run out of fresh human data .

An unspecified study cited by Kraft found that female physician notes were approximately twice as detailed as those of male physicians, suggesting that incentivising nuanced data capture - including by rewarding clinicians for richer documentation - could be a practical step towards improving the quality of training data . The broader point is that the problem is not a lack of available information but a failure to capture, value, and integrate it into the systems that matter.

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The Intersectional Dimension: Women of Colour and the Global South

The discussion acknowledged, though did not fully resolve, the additional layers of disadvantage facing women of colour and women from the Global South. Even within the United States, maternal mortality data is insufficiently nuanced, with African-American women facing disproportionately high rates that are not adequately reflected in research or clinical guidelines . Ethnic-specific risk factors - such as the increased risk of certain forms of anaemia among women of Southeast Asian descent - are not systematically incorporated into screening protocols . The one-size-fits-all model, extrapolated from a young, healthy white man, simply does not work for the majority of the world's population .

An audience member from Tanzania offered a striking illustration of this gap, observing that her grandmother and mother had never experienced severe menopausal symptoms, and suggesting that research grounded in African women's experiences could yield transformative scientific insights - including for women in other parts of the world who are now experiencing those symptoms . She also noted that while her children aged nine and ten already wore glasses, she herself had no eye problems at nearly fifty - a further illustration of the potential value of research grounded in specific populations. This contribution reinforced the argument that the populations most excluded from research may contain the most valuable scientific information. Chan raised the additional concern that data on women from the Global South must account not only for race and ethnicity but also for language, cultural context, and the vastly different conditions in which women in developing countries live .

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Proposed Solutions: Standards, Procurement, and Regulatory Models

The discussion generated several concrete proposals for addressing these systemic failures. Kraft-Buchman proposed establishing representativeness as a formal scientific standard, drawing on the principle of substantive equality embedded in CEDAW - the international treaty on women's rights - which holds that equality means ensuring everyone receives what is genuinely suited to their needs, rather than a one-size-fits-all provision . In a health context, this would mean ensuring that the people in a given population are sincerely represented in the data used to train models for that use case .

Chan proposed procurement requirements as a more immediately actionable mechanism, arguing that it is easier to require gender-disaggregated data and algorithmic transparency before signing a government contract than to audit for compliance after the fact . This approach would place the burden of proof on technology providers and model builders before they are awarded public contracts, rather than relying on voluntary commitments or post-hoc accountability. Nordic countries were cited as a regulatory model: several have mandated sex-disaggregated data collection across national registries, enabling researchers to track the full life-cycle impact of health conditions on women and to build the evidence base needed to drive systemic change .

Kraft also described a multi-stakeholder convening approach, bringing together health ministers, pharmaceutical companies, health systems, and financial institutions to address the siloed nature of the problem . Each actor in the healthcare system tends to point the finger at another - clinicians want better pharmaceuticals, pharmaceutical companies want government incentives, and governments want clinical evidence - meaning that collective accountability is essential . A survey of around a thousand or so physicians across six countries found that around 80% recognised sex differences in their patients but felt they lacked the tools, resources, and clinical guidelines to deliver adequate care . This suggests that the problem is not primarily one of clinician attitudes but of systemic infrastructure.

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Empowering Women as Data Producers

One of the more original ideas to emerge from the discussion was the reframing of women from passive subjects of data collection to producers, owners, and potential sellers of health data. Kraft-Buchman proposed training women's rights groups to become data collectors, managers, and owners, enabling them to sell that data back to markets that currently lack it - and also to understand the forensics of their own information ecosystem, including in the context of misinformation and disinformation . This would work at multiple levels: improving health data quality, building local capacity, and creating economic opportunities for women's organisations . The broader vision was of women as producers of information and digital solutions, not merely as recipients of technology - a shift from measuring access to measuring women's ability to file patents, create new technologies, and own the means of digital production .

This proposal connected to a broader observation about the Global South as a potential source of innovation rather than merely a recipient. Technologies developed under resource constraints - such as a remote ultrasound device operable via a mobile phone, developed for settings without ready access to physicians - can leapfrog traditional infrastructure and subsequently be applied in the Global North, including in remote rural areas of the United States . Kraft-Buchman extended this, suggesting that African countries with diverse populations could collect nuanced health data and sell it back to the Global North, which lacks data on its own racially diverse populations . This reversal of the usual direction of technology transfer was identified as both a scientific opportunity and a potential commercial one.

An audience member from China asked specifically what individuals can do in daily life to call attention to endometriosis and the failure of the medical system to serve women - particularly in contexts where public demonstrations are difficult. Kraft responded by pointing to the role of celebrities such as Padma Lakshmi and Oprah in raising awareness of women's health conditions, and to social media as a significant driver of progress in this space, noting that women sharing their experiences publicly had helped shift the conversation in ways that formal advocacy had not always achieved.

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AI Gender Bias in Everyday Interactions

An audience member from China introduced a vivid illustration of how AI gender bias manifests in everyday use, describing posts on Chinese social media advising women to hide their gender when interacting with AI, because AI systems respond more logically to users presenting as male and more emotionally to users presenting as female . This prompted a direct and culturally specific response from Chan, who addressed the questioner as a woman of colour and East Asian descent, acknowledging the particular cultural pressures around assertiveness and non-confrontation that compound the problem . Her practical advice was for women to write explicit standing instructions into their AI prompts, specifying that they expect logical rather than emotional responses, and not to accept gender-biased outputs as inevitable .

Kraft added important context, explaining that these biased responses emerge because AI systems have been trained on internet data that encodes generations of gender stereotypes and social norms . She also highlighted a related form of algorithmic bias: the word "vagina" is effectively the most censored word on the internet, and health conditions such as endometriosis and postpartum are shadow-banned on social media platforms, while equivalent male health terms are not . This means that the problem is not only one of training data but of the algorithmic choices embedded in content moderation systems, which actively suppress women's health information and further reduce its representation in the data used to train large language models.

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Translating Commitments into Action

A recurring theme was the frustration shared by all speakers at the gap between international commitments and concrete outcomes. Chan described the Hamburg Declaration on responsible AI for the SDGs - a multi-stakeholder document that includes gender as a specific priority area, developed through UNDP's collaboration with the German government - as an example of a commitment that exists on paper but faces the same implementation challenge as countless other international frameworks . She acknowledged that the international community is skilled at producing documents - including WSIS, the Global Digital Compact, and the Hamburg Declaration - but consistently falls short at turning them into measurable, accountable action . An audience member articulated the shared frustration directly, noting that despite five years of sustained conversation about incorporating women's perspectives in tech and pharmaceuticals, progress has not matched the volume of discussion .

Kraft-Buchman proposed that WSIS e-health indicators could be updated to require gender-representative training data, with WHO and ITU as facilitators, creating a cascade of accountability through international standard-setting . Oriana Kraft introduced the concept of a "health data race" - in which countries compete to be the first to collect comprehensive, diverse, and nuanced health data - as a positive competitive incentive, particularly for nations seeking scientific recognition and commercial advantage . The closing message was one of cautious optimism: the scientific opportunity represented by untapped women's health data is enormous, the willingness of women to contribute their data is already demonstrated, and the policy tools - procurement requirements, scientific standards, regulatory mandates - are available . What remains is the political will and institutional coordination to deploy them before further digital infrastructure is built upon an already unequal foundation .

Caitlin Kraft-Buchman
Thank you. Thank you. Thank you. And I'm so grateful that you're here, that you found your way here. And it's early in the morning and there's chaos and so much else that's interesting and fascinating to do. I'm Caitlin Craft Buckman from Women at the Table. And I'm here with this amazing panel. Yeah. OK. People connecting and doing. And I think our. Another point is that high -risk AI, as you all probably already know, because I'm sure that you are all experts in your own sectors, if not this one at least. So we know that in hospitals, in courtrooms, in systems, you know, who's deciding who gets a loan, who gets diagnosed. All of these are being judged on the averages, as you know, from the technology, right? So there's the privileged center of people. I would be somebody in the privileged center. And the farther away you are from the center of privilege, the less you are in the data, the more rural, the more poor, the more disabled. It just goes out. And that way machine learning works is that, first of all, there's averages. So there's a little bit of the line becomes very flat. And then there's recursive learning, learning that learns on itself, comes in. That line sort of gets shorter and shorter. There's scientists in the room. You may or may not like my. particular metaphor, but to this idea that getting smaller and smaller until even that privileged center probably doesn't have as much of a prominent place. So this is a problem writ large for women all over the world, compounded and super urgent for women with more intersections, but it is a problem, I think, for us all. And I think that one of the ways, um, anyway, so we, we just think that it's completely urgent. We're going to have, we're, um, I'm a big admirer of both people on this panel. So, um, I'm going to wind up having more of a conversation maybe then, which is great instead of a canned panel. Um, we have, first of all, the regrets from Ambassador Kha, very sadly was called to the, because he's very popular, to the global dialogue, um, where he has moderating a panel that seems to be sooner rather than later. And his, uh, So his actually wonderful and brilliant staff is at the Human Rights Council because there's something happening. They're negotiating a settlement. So here we are with us without them. But we're going to carry a lot of what Ambassador Carr has brought forth, which is about representativeness in the data and how that works and what that means here, too. So I'm here with Yuping Chen from UDP, who is a mover and shaker. And we will hear more about her in a moment. And Oriana Kraft, who is the founder of FemmeTechnology .org. So we've asked Oriana just to sort of start us off to do a little bit of a landscape and to sort of walk us through some of the work that FemmeTechnology did with also women at the table on AI. So would you share your screen and take us
Oriana Kraft
through, please? Yes. And this is the microphone. Can everybody hear me? Okay, awesome. Yeah, so maybe just as a primer, because some people are aware and some people are not, and it shocks them to find out, there are sex differences in every single cell in the human body, which means the way every organ functions between men and women is functionally different. The way diseases present is functionally different. But we've only really studied men and through every layer of kind of the research and clinical stack. So we study male cells. We study male animals like mice. We don't even use female rodents. And we've only really functionally studied men and usually only kind of healthy 70 kilogram white men. And what does that mean? That results in kind of shocking stats like the fact that women are diagnosed on average four years later for the same disease as men across 770 diseases. Women are 50 percent more likely to die following a heart attack, despite it being the leading cause of death in both men. Women because. while physicians are only really trained on the way cardiovascular disease presents in men, but also because the tools we use to diagnose cardiovascular disease are based on the way it presents in men. So basically troponin levels, which is a biomarker for cardiovascular disease, the cutoff rate is based on the male body and it's lower in women. And so a lot of cardiovascular disease gets dismissed that way. Also, the imaging technology that we use is based on the vessels that are more impacted by men. Basically, men and women have different vessels that are more likely to cause a heart attack. And so that's also missed. So kind of every layer of the stack, you're not catching it. And then also, once women have had a heart attack and are diagnosed, they're not as likely to be prescribed gold standard treatment. So that's why they're also more likely to die. And then even following that, there was just a big study that came out two years ago, I think, which was called the REBOOT trial, which found that the treatments that are considered gold standard are not as effective in women. So at every layer, right? Yeah. And so maybe to show why this is a problem when it comes to models, we kind of created this cascade of distortion showing like what that stack is. So on the first kind of echelon, you have the actual clinical research that's done. That's kind of what I explained at even the preclinical level that's studying cells and studying animals. And we don't even use kind of female models there. And there are, as I mentioned, since there are sex differences in every single cell in the human body, it matters whether you use male or female cells. But we don't. From from C, as you can see, male animals outnumber female animals five point five to one. And this is actually based on a false assumption. Basically, they decided women or even female mice were too complicated because of the menstrual cycle, because of fluctuating hormones. But it actually turns out that male male mice are more unpredictable than female mice. Because with the female mice, you at least have a predictable cycle. So you kind of know what hormones are going to fluctuate throughout. But with male mice, with testosterone, it's a much more dramatic increase. So it's less predictable. So actually, it's totally based on a completely false assumption. Then at the next echelon, because you've only studied. male cells, male animals, male bodies, which results in, by the way, women are 50 to 75 % more likely to have adverse drug reactions because we've not included women in equal numbers in clinical trials. They were effectively banned until 1993 in clinical trials, which means basically all the drugs on the market were never tested in women's. You're kind of doing like a live experiment. But you have that stack with the clinical research. But because you only study them there, we create our clinical guidelines on the basis of that research, which means that they're also all based on men. So the kinds of examples that I gave with troponin, with the cutoff being too high for women, with the way cardiovascular disease presents what you should watch out for. I mean, I was in medical school myself not that long ago, only a couple of years, and we're still only trained in the way it presents in men. And then you kind of have an asterisk. And they're like, but remember, it presents differently in women. And women are 50 % of the population. And it's still kind of not the standard of care. in training. And so, yeah, as you can see, troponin thresholds calibrated on men miss 42 % of female heart attacks. I mean, that's a huge problem. Then what that means is that endometriosis, it takes on average seven years to get diagnosed. And, you know, I think PMDD, which is post -menstrual dysphoric disorder, takes something like 15 years, right? There's, I mean, you're just not trained to recognize the way it presents in women. What does that then mean? If you don't have the clinical guidelines, if the clinical guidance are not reflecting reality, women are more likely to be misdiagnosed, kind of like the example that I gave with endometriosis. Women with endometriosis have to see on average five physicians before they get an accurate diagnosis. What does that mean? That means that every physician the person has seen before is recording an inaccurate diagnosis. And unless you live in somewhere like a Nordic country like Denmark, actually, which has done a lot of really interesting large scale research, you're never getting that updated diagnosis. Right. Because you don't you don't have it linked to the patients. You have all these discordant records and kind of with a condition like endometriosis, a ratio of of four times as much misdiagnosis as an accurate diagnosis. And nobody's going back and essentially cleaning that up or updating it. And, you know, a lot of the large language models. Right. Because the theme of this is all around AI are trained on that inaccurate data and nobody's going back and seeing what is the actual reality. And then so then, as we kind of said, the models are then trained on that biased history and then AI trained on misrepresentative data reduces diagnostic accuracy by eleven point three percent. You know, there's a lot of people who think that you can just kind of have explainable AI. So if you have the model, explain the reasoning that it will improve it. But it it turns out, no, like physicians will it still reduces accuracy by eleven point three percent. So you really need the accurate data. to have accurate algorithms. And then, yeah, I've kind of alluded to sort of some of those negative outcomes that it have. Women are twice as likely to have adverse drug reactions as men. And they also spend there's like this common misconception that because women live longer, that means that they're healthier. But women live longer, but spend five more years in poor health than men. So their quality of life is not as high. And it actually doesn't come at the end of life. People think it's OK. They live longer. And so it's stacked at the end. It comes in their prime working years. So it has a real outcome on their ability to earn financially. I don't know. I'm happy to go into more
Caitlin Kraft-Buchman
detail, but I think that that was a big, big overview. I don't give it to the moderator. That's fabulous. And we want to hear more. And I'm sure everybody's got questions that we'll go through, too. So what does that so that's the. That's the reality that we're living with. How would, you know, now you're building all this extraordinary DPI, all this digital public infrastructure. We're building out. We want to have countries have access to this. But what do we do when we're building on top of something that actually in
Yu Ping Chan
its very core is not serving all the population? So it's your piece. Thank you so much, Caitlin. And it's really great to be here. Like Caitlin knows, I'm quite a big fan about really pushing on the gender aspect when it comes to digital, because it's so often in some ways forgotten. And there are too many men, frankly, in tech. I was just actually on a panel where it's all women. So it was actually remarked upon that this is one of the few times that we actually have an all women panel. And I'm really proud to be on one with you as well, because really. it's really kind of frankly in tech circles and if you look at AI for good and WIS is all too often women really are disproportionately underrepresented in a lot of this so it's amazing to have this conversation I really applaud also the men that are in the room really thank you for being allies in this and we really need to keep pushing because if not really gets overlooked on that note I completely agree that like as we're building up digital public infrastructure and digital systems right we have to recognize the biases that already exist in the data and the substrate on which we're building these types of foundations so for instance UNDP did a gender social norms index in 2023 where we surveyed 80 countries 85 % of the global population and we found that close to 9 in 10 people 90 % of men 87 % of women hold at least one bias against women and there's been a decade of stagnation in terms of progress on this so the data itself is based on a substrate of already inherent assumptions about men and women and so the models the data already based on that so the data that feeds the models is built already on unconscious biases or certain types of norms and expectations and then you're right Caitlin as we build this sort of digital public infrastructure that draws on those types of of biases and so forth, we're in some ways hardwiring these kinds of assumptions into how we build digital public infrastructure. And at the point that already is a digital gender gap, right? I think the global surveys are something like 10 to 15 % gap between women and men in connectivity and use of the internet that grows to something like 30, 40 % in these developed countries. It becomes sort of a worsening problem where the more we keep digitally transforming without actually addressing these types of questions, the worse the biases will get and the models will basically be built in an asymmetrical, disproportionate type of way. I'm not very frankly, very sure how to fix this besides just sort of continuously calling attention to this fact. Because I do think that unless there is a very clear commitment from the model builders, from the big tech companies, from the people that are actually coding and building it, that they're going to address these types of issues. proactively fix for it, I don't really know what is the way to do it. So I know there have been, like, in the general gender discourse, right, like pushback against having quotas or very firm types of regulations that say you need to address this type of issues. And in the tax circle, I know we've shunned away from this type of stuff, but I'm not actually very honestly and being very candid here, sure what is the fix for it? Because as you pointed out, these things exist. We know these things exist, but yet we've not really taken that proactive action to address it. Can there be sort of guidelines or expectations that we set that we say we expect these types of things out of international organizations, national governments, and private tech companies? Maybe that's a start to call for that kind of gender accountability when it comes to algorithmic transparency, data, a commitment to update, like, data sources when this happens, the models and so forth. Maybe that's the kind of thing that we should be calling for, because if not, we talk about the problem, we clearly recognize that there
Caitlin Kraft-Buchman
Yeah, I don't think, I mean, I think everybody now agrees that there's a fix. We all agree that actually de -biasing the data is not possible, really. You can sort of make it less awful, less bad. You can mitigate a bit, but it doesn't, isn't solving the problem. I do think that as everybody is also turning somehow to sovereign AI for different geopolitical reasons, that we're all going to arrive at the fact that smaller language models for sector -specific reasons are going to work, right? So you could have like a health model that works if you built it from scratch, which will be my next question to Oriana. But one of the ways to get to that also is that we're starting to look at, could we call for, representativeness? as a scientific standard. So when we say standard, it's also a word that, you know, we're all using what does standard mean, but like really a scientific standard that we agreed to so that you have in a use case, a specific use case, then you have the people in that population that are really sincerely represented. In a general population, it would be half women, but in some populations, if it was a sign language thing, it would be the people really generationally and demographically within the deaf community. And that may be a way. We would also be looking towards CEDAW. We have a panel with CEDAW later about like where does substantive equality, right, because CEDAW, the treaty that everybody signed and agreed to, is that there's a difference between equal opportunity or general equality. There's a lawyer here who will tell me what it is. But at the end of the day, substantive equality means is that everybody gets the sort of the bicycle. the size bicycle that would fit them as opposed to everybody gets a one size fits all that you really get things that are adapted to. Anyway, we can go into those means, too. But if Oriana, if we were going to build something from scratch, what are the kinds of things that you need to see in the capture the data differently and what and what are the opportunities for that?
Oriana Kraft
Yeah, maybe just kind of building off of what you said about the tech sector not being a big fan of quotas and mandates and kind of insights. We so we did an event recently in March with a lot of health ministers in New York where kind of the the idea behind it was to bring people from government, from the pharmaceutical industry, from health systems and from the financial industry, because really with health, part of the issue we've seen is if you only take a siloed approach, everybody is going to point the finger at someone else. Right. The clinician is going to say. you know give me better pharmaceuticals that work for women that don't cause twice as many adverse drug events and you know like I'll do a better job or give me the fundamental research and I can have the guidelines right the clinicians don't have the tools we actually also did a survey where we surveyed I think like a thousand or two hundred physicians across six countries which showed that something like 80 percent of them you know they see sex differences in their patients but they don't feel that they have the tools the resources the clinical guidelines to be actually be able to deliver adequate care so it's not that clinicians don't see the problem and then you have the stat that 80 percent of women feel dismissed by their physicians so you have kind of this imbalance on both sides but the point of the event was to bring all these stakeholders together because everybody points a finger at someone else right like then the pharmaceutical industry will say like government has to incentivize me right to run these clinical trials or to innovate for diseases that impact women disproportionately and maybe just to say there are some countries I think like the Nordics are really the most important countries in the world and I think that's a really good point I think that's a really good example I've already pointed to them that mandated sex disaggregated data collection across national registries, because with an issue like health, you kind of have to see the full life cycle effect. You have to see how it impacts like a woman's like lifetime earning potential, what it's costing your health system to not innovate for it. So I think that that could be an incentive to kind of because I think everybody's just very siloed and how they're acting to your question, right, about what is the kind of data that we would need to collect? Well, one is we need to collect sort of a lot. It might be surprising to you to know that all women go through menopause, but there is no basically button or form in any HR to capture that a woman is going through menopause. Right. So we have forms for capturing kind of blood pressure, you know, various other body parts, but there's nothing around that. There's nothing around the menstrual cycle. There's nothing around menopause. There's nothing really around postpartum. And so an example here, we would need to capture female life stages because they really they interact with every organ in the female body. So pregnancy. especially things like preeclampsia or gestational diabetes cause a two to four times lifetime increased risk of cardiovascular disease. Right. And so you would want to be capturing that information to then monitor the woman and be able to do early detection, which could at the very least it could potentially save her life, but also just kind of reduce downstream comorbidities. So female life stage factors. I mean, I think like in medicine as a whole, you would just want much more. Nuanced data collection. I think the EHR kind of served its purpose, but it reduces things to very like flat binaries and health is much more multifactorial. And part of the problem is also that you have all these siloed organ systems that are not talking to each other. So you're not capturing kind of like nuanced signals. Or is that was that was that your question around what kind of things would you want to increase? I mean, specialists, doctors, specialists who don't speak to each other or the organs don't speak to each other. I mean, right now, the way our. medical system is designed is right. You have an ophthalmologist, you have a cardiologist, you have an endocrinologist. So you're having all these things in silos. So that's one issue, right, just with medicine as a whole. Then the other issue, particularly as it relates to women, is there's no capture of the life stage. There's also no capture of the menstrual cycle, which is incredibly important because a woman's immune profile changes throughout the menstrual cycle. So you have better kind of vaccination response rates and less adverse drug reactions, depending on when you vaccinate a woman in the menstrual cycle. Right. And like that could be transformative for a woman's life. You also have better, interestingly enough, responses to chemotherapy. Right. Like there are there's a lot of signals in the female body that we haven't like designed the instruments to collect. Part of the reason we don't have the data is we have like no easy way to capture that information and nobody is incentivized to capture that information currently. But we had, you know, it might it might seem kind of controversial, but one of our recommendations at the end of this very long paper that is very interesting to read, I promise, was... It's online, so you can all have access to it. So don't worry if you're not capturing the slides. Okay. One of the recommendations we had was incentivize female physicians to capture the information because they found that female physician notes were, like, twice as detailed as male physicians, right? And, I mean, if male physicians also have detailed notes, that's great. But, like, they might all, you know, you want richer information, right? And right now people are just training on the data, but there's not, nobody's really incentivizing nuanced data capture. Another way you could do it is incentivize patients to capture their own information, right? Women are coming to physicians with aura rings, with, like, cycle logs, with their own handwritten notes, and, like, where's all that information going? Maybe if you have a physician who believes you, it's being captured in the HR, but it's not being captured, and the patient. It's actually the richest source of information possible. And what we find with a lot of femtech startups is women are willing, you know, I think they should be financially incentivized, but women are willing to donate their data just to have better care and to contribute to advancing women's health care as a whole. So it's not that people are not willing to participate. They are. It's just that we're dismissing this incredibly rich source of data, which is somewhat ironic when, you know, all the big AI companies and model labs are saying they've run out of fresh human data. And so they're just going to continue training on synthetic data. And part of the problem with synthetic data as it relates to women's health is each time you train a new model, it kind of loses the signals from the tail ends of the cycle. So if it kind of goes like this at the tail end of the distribution, women are not rare in reality, but they're rare in the representation of data. So each time it gets trained, you lose that signal. And so you have all these signals as it relates to women's health that are being erased that already exist. And then you have also the problem of them not being capitalized. They're not being captured in the first place, right,
Caitlin Kraft-Buchman
with things like pregnancy, postpartum, menopause. okay so how do we turn this interesting uh semi -tragic state of affairs into into something that we can do something about and maybe one of one of those ways is through commitments to something like this maybe not that maybe not but maybe on the the hamburg declaration which you've had a really very pivotal part in in in um in crafting and driving forward and it names women and girls as its commitment so is there a way to sort of turn a commitment into action and to so caitlin's referring to undp's role with the german government in
Yu Ping Chan
drafting the hamburg declaration and the responsible use of ai for the sdg so this has been a product of the hamburg sustainability conference that's been running in hamburg you for the last three years. And actually, it was just a week ago that I was actually in Hamburg for the third Hamburg Sustainability Conference, where we were actually holding a session on how the Hamburg Declaration that started the year before has actually translated into impact in terms of the endorsing organizations and the areas of work that they've done. So we reported on, for instance, people being trained, and I think there was a lot of statistics around, for instance, the use of AI -trained systems resulting in better healthcare, not specifically on gender, but more in general. So the idea is that this was a multi -stakeholder declaration, which includes gender as one of the specific areas of action and priority for where private sector companies, international development organizations, and national governments could commit to seeing through these types of practices, responsible AI in these particular areas as well. And so that question of, like, how do you translate a commitment that's on paper into actual action? it's frankly very challenging and I think that this is the same conundrum that we're facing across the entire UN right we have countless documents we have WSIS we have the global digital compact and what do we do with these that then become meaningful in concrete ways that changes people's lives because frankly like we're very good at coming up with documents but like where the international community then falls short is turning this into actual action I literally was just on another panel where it was with the private sector community and the business community and it is exactly the same point right we all have committed to these things but what is the next step to actual actionable outcomes and specific aspects that you hold people accountable to I think you mentioned this idea around standards I am actually quite a big fan of this idea around procurement as well because frankly I do think it's a lot easier to require certain things before you actually sign a contract than to audit for it after so to some extent if you can have that kind of requirement or expectation that's already brought into the particular contract before you do it, that could be a way that we actually hardwire in these fixes around gender and the requirement around gender disaggregated stratified data. So for instance, if it's a health contract, right, is this something that we could actually consider building in? And perhaps you pointed to the fact that Nordic governments have actually been requiring this type of data disclosure and so forth. I don't know whether we can go further to require this in terms of like government contracts and procurement, but procurement seems to me of, well, not an easy, but at least a direct way of asking companies, builders and tech providers to make sure that this is at least part of what we do. I actually had a question for Ariana because, and this is something that I struggle with as UNDP sometimes, because our focus is, again, on developing countries and the global self. The global north, to some extent, is taken care of. But when you look at the global self, how do you see, for instance, the issue of the disaggregated data and the gender data, for instance, what is the extent to which it takes into account women of color? And then not just like women of color, but also the question of women of color that come from different countries of the world. and the fact that in some ways the data sets, the languages that we in the global south operate in, are vastly different from
Speaker 1
anywhere. I think in terms of, you know, how nuanced is the data? I think it's sadly not nuanced enough, right? If you look at a country like the U .S., which has just shameful maternal mortality, and especially as it comes to African -American women, which it's much higher, it's not nuanced enough. I think sex should just be the first step, right? There's this thing called like sex as a biological variable. Because there are sex differences in every single cell in the human body, it should be the first step of precision medicine. And then you continually stratify, right? A woman who's gone through menopause at 60 is completely different from a woman at 20, right? Women of different ethnicities are completely different, right? We know you're more likely, if you're of Southeast Asian descent, I believe, to have a certain form of anemia, right? Like that should be a risk factor in your screening. You should continuously stratify it. It's just not. It's not nuanced. They've kind of taken this model of like a young, just honestly, a young, healthy white man. Because we don't even have studies on older men, right? And extrapolated it out to everybody. And it doesn't work for everybody. It's this one size fits all. It's kind of like... which I think is the real opportunity with AI, before we couldn't study large -scale populations at scale. So we would take, I don't know, a sample of really sometimes 20 people, 30 people, and extrapolate it out to a population of 7 billion people. Instead of kind of doing it in the reverse, like collecting signals from as many people as possible continuously and trying to create these cohorts. And if you're here, you might have some of this cohort, you might have some of that cohort, you might have some of that cohort.
Speaker 2
Yeah. I mean, you were kind of saying, I mean, I guess your question was like how could we get more nuanced data or, yeah. What is the state of data now when it comes to, I think you just answered that question, right, women of color?
Speaker 1
Yeah. And my bigger concern is women of color in the global South as well. Well, the one thing that I will say is interesting. So the Gates Foundation does a lot of work when it comes to women's health, particularly kind of in the global South. And one of the things that they said is, is because as they said on. Fortunately, the state of women's health is so bad everywhere. It's worse, obviously, in some places. They're finding technologies being able to kind of leapfrog. So if you take this thing like this remote kind of ultrasound that you can do with a mobile phone, right, to like so you don't you're not requiring a physician. You can do this remote monitoring that was actually developed for the global south, but could then be applicable in the US or in other remote rural areas. So in some ways, kind of the constraints that are when you're in a lower resource setting that are forcing you to innovate are making there be able to like be innovations that could then be applicable also to the north. You could actually innovate for the south and then extrapolate it to the north, which is usually not the direction it
Speaker 2
goes in. Yeah. You know, you know, I think actually that's that's an opportunity for small states. It could be a Singapore thing. So that's not the global south. But do you know what I mean? In a small tech enabled to really to collect the data in a real. fabulous nuanced way understand it and then export the model i think that there's actual real financial sort of at the end of the day i've been saying to some of our african colleagues that if we really got the data right that you would be able to sell it back to the north because a they don't have data a and b they don't have it on their own populations um of their sort of racially diverse populations at all so um and it would be probably from a scientific point of view you'd want something well simple like super diverse but also super um also sort of mono focused anyway it would it would be like a scientifically great use case i think um we one of the things that we've been talking about besides for this representativeness um ness in the uh as a scientific standard and the data is also to maybe uh we would like to be able to implement this. So it's only an idea now, but it's to train women in essentially very, in any context, women's rights groups to be able to go out and collect data and to collect the data and to become the data collectors and the data owners and the data organizers and to be able to also sell that data back and manage that data. And that would work in a couple of levels, one for health, but also would work in sort of a misinformation, disinformation context, where they would also be able to sort of understand the forensics of their information ecosystem. Sort of happier about because it's like less syllables. But I think that there are a lot of opportunities for us to change. This notion of development of sort of protecting women. and going more to women as the producers of information, of solutions, that we stop. Only access is, of course, incredibly important, although we often say, as people focus on the political economy, access to what? But really, we're only measuring access because we want to understand what the destination is. We want to know how many people are accessing technology. This is a larger point, but going to how many women are filing patents, how are they enabled to express their creativity in terms of creating new technologies, in terms of creating and owning sort of the means of digital production. So that's sort of like destination. And this is a destination play, I think, this health data part. So we're sort of also looking to, incentivize and I hope inspire. Thank you. partners. People are able to go back to their governments to sort of say, you know, why don't we do this? Because I think that there's a real, there's a place for people to innovate and to really sort of change You had, I may open it up for questions or it may, does anybody have a burning question? We'll keep talking to ourselves.
Audience Member 1
Yes. Hi, ma 'am. Hi. And first of all, I learned a lot from your speaking and it reminds me of a post I have seen on China's internet. It is teaching girls to hide your gender when you are talking to AI, because it is found that if you make a mistake, you're going to be in trouble. So I think that's a really good point. If you act like a man, the AI will be more logical, but if you are a woman, the AI will be more emotional. So I want to know how this can be changed or how we can deal with it. Yeah, this is my
Speaker 2
I'll take a little step, but I bet you Ping has something really smart to say.
Yipeng
I don't have anything smart to say except to say that you should not live with it.
Speaker 1
Yeah, I mean, so just first of all, maybe I'm just going to kind of explain what you already said. It's like, you know, where does that come from, right? It's taken because it's been scraped from the Internet, stereotypes and social norms and all of those roles that we've inherited for generations. And it's absorbed them in terms of its reaction. Different people have different reactions to that. There's some people that say we need to flood. We, every older woman, every young woman. And girl needs to flood the Internet with positive representations of women. So that will overwhelm what's already there and the bias. I think that's what we need to do. I think that's what we need to do. I think that's what we need to do. I think that's what we need to do. that may or may not be the most effective, but that's an idea. At least it makes you feel that you have some agency to it. Some of it may be just like to go back to the very beginning and to work on, I think, these small sector models and not lean so much on the large language models that have these problems that we're never going to solve that. And I think that that's where I think kind of in sovereign AI we're going to go. But it's a horrible situation. I also think, on one hand, it's horrible, but it's already great that they're saying, that they're acknowledging that there's this bias baked in. I think that an opportunity, I think there's really low literacy when it comes to understanding the assumptions a model is making about you. And I think across the board you should have a right as a citizen to know what you're doing and what you're doing. And what assumptions a model makes about you. And I think in particularly high risk settings like the law or like health, you should be entitled to that knowledge. Right. Because right now people are deploying these models that are making assumptions about you and you don't know what it's on the basis of. It could be also your income level. Right. It's like all these kinds of things that are that are being made. And I think the kind of flooding the Internet with positive representations is unfortunately not a solution because it's not only a question of data. It's a question of the algorithm. And unfortunately, the majority of people shaping the algorithm are making assumptions about women. So one example is like vagina is actually the most censored word on the Internet. It's like basically shadow banned on social media, but also things like endometriosis, like postpartum, literally just health sector. Conditions are banned, shadow banned on the Internet. But like semen is not. Right. And
Yipeng
And I also specifically want to answer this because you're clearly from China, woman of color, Asian descent, and we are in our ethnicity particularly seen as, well, less assertive, submissive, tendency not to push back and non -confrontational. And so when you said, do we live with this? I really want to tell you don't, right? You push back. And I know it's hard culturally sometimes to really push back. But I would say that even in the basic use of the AI model, right? Write it in to say that this response that you wrote is overly emotional. I want a more logical response. I'm coded into the actual prompt itself and make it a standing instruction in your AI model. So I have very clear preferences in my AI models for how they interact with me. And this should be one of your standing instructions. And just say it in no uncertain terms that you expect the model to interact with you in this particular manner and not in this other way. And I will say this again to East Asian women. Asian women, because I see quite a number of you in the room, young women, this is not what we should be standing for. And that over time, we need to correct the way we interact with technology on that type of term. Thank you so much, Yipeng.
Speaker 2
It was this madam and then that madam.
Audience Member 2
Thank you very much for a wonderful presentation. It was actually eye -opening and in some of the areas I wanted to share an example from where I come from. I come from Africa, Tanzania. My country is Tanzania. What surprised me is that my grandmom, my mother, and the old ones, they never experienced like, I'm just giving one example, menopause symptoms. It's good if the researchers were based on women. and say of African -American origin, maybe they will find out why people do not experience worse menopausal symptoms and maybe it could have helped even our generation because now some of us are really experiencing it. So I'm just joining hands with what you presenters have said. I've also checked in the area of eyesight. I'm almost 50 and I've never had any problem with my eye, but my kids, only 9 and 10, they've already started wearing glasses. So doing research based on the actual group, let us say women, is very important. It's sad that all these years we've been treated, but we're still doing research based on the actual group. and data based on men. Maybe it's why sometimes even you use the medications and they don't work as to your expectations because of such mess up. I thought I should say that. Thank you very much. And I would love if you would give us the documents and sites so that we can read them all. Thank you.
Speaker 1
We do think absolutely. This is a new frontier. There's scientific opportunity. There's a lot of money to be made, but there's also a lot of great science and discovery to happen. So it's horrible to leave that on the table. We don't have to go to space. There's so much we need to really discover here.
Speaker 2
Hi, I'll give you the last question.
Audience Member 3
Thank you. I have a question about, and thank you for the panel. I think it was a great conversation to have. I have a question about advocacy and what can we do at this stage? Because I feel like for the last five years, there's been a lot of conversation around incorporating women in tech, incorporating women's health perspective. in the pharmaceutical sector but yet it doesn't feel like it's advancing at the pace that it should based on how many conversations we've had and how many organizations so i guess my question to you all is like okay 2026 where are the gaps in terms of advocacy and what can we do to help maybe move the speed a bit faster so that the generation that's coming up is able to not experience what we've been experiencing for now several generations
Speaker 1
having the health ministers and various leaders of different countries i think it's a i think it's a political issue um i think um i i actually think it should be a political issue and in that i think health should be a part of people's platforms when they're running I think we're seeing that increasingly become an issue. Right. So, like, for example, in Switzerland, health insurance has risen consistently every year. Right. In the U .S., it's becoming a cost of living crisis. But in many countries. Right. I mean, if you're not healthy, you don't have any quality of life. And I think, you know, I think now politicians should have to speak to what they're doing when it comes to women's health. Personally, it's not it's not there yet, but we are seeing in the U .S. there are now people who have I'm not a huge fan of lobbying, but there's people who've created basically a pack to lobby for women's health when they say there's all these special interest groups. Right. You know, AI being one of them. And why don't we have a special interest group when it comes to women's health? I think I think there's been kind of a lack of awareness. Right. Like it took my going to medical school and being curious. I wasn't even formally taught about these gaps. So I think when you have half the population being. essentially uneducated just because it's not talked about. You know, we have this assumption. I had an assumption being that I was an equal citizen. Right. And actually, fundamentally and functionally, you're not an equal citizen in health is just one example right across the law. And I think we do, though, have the right to vote. So for me, I think it's a political issue because you see that when the public sector sets incentives or regulation, particularly for the pharmaceutical industry, that that's the core buyer for the pharmaceutical industry is the government. I think that that's what would have the most leverage. But you need politicians to want to do that. And therefore, you need the population to only elect people
Speaker 2
Avenue, I agree with all that. I agree that I think basically we'll just have to keep pushing at it and really just asking for this to be, like you said, more concrete. And I share that frustration, really. I do think that this is the moment. To think about what is actionable in this space. and see what is possible to create coalitions around what is actionable. Yes, please. I just feel bad. I know you had a question. I don't know if you still have a question.
Audience Member 4
Yeah. At least not in the favor of women. And I also know that there is an end of March that happens every March just to promote the to call attention to this disease. But here in China, I'm from China here in China, the promotion of. let's say drawing attention to endometriosis is definitely hard to to be held in such a way like holding a march or holding a parade it is it tends to not work this way so i'm thinking that so my question is as an individual is there anything that we could do in our daily lives to call attention to not just endometriosis but to call on the fact that our medical system currently has not served women well and what can we do to promote to change
Speaker 1
that um well i first of all i think that you kind of are already doing that by by being here and by speaking out i think men have a huge platform um disproportionately right because it doesn't work if it's only women speaking i think in the u .s i can't speak to china but uh in the u .s and the uk part of what had a lot of impact was celebrities going out and sharing their individual stories So like you have Padma Lakshmi, you have like various supermodels have endometriosis and you start to see that it doesn't matter who you are. Right. Like you have Oprah kind of talking about menopause. It doesn't matter how affluent you are, how well known you are. You are impacted by the lack of research on these conditions and the lack of solutions. So I don't know if there's a like probably the equivalence in China. Right. In terms of like celebrities. And then I don't I as an individual kind of speaking out like I think like it's kind of weird to say, but I think social media is what has led to there being some progress in women's health. There's been a lot of conversation and suddenly people started to see that this wasn't an individual problem, but it was a collective problem. And so if you start to get lots of people sharing their stories, I think that that's kind of the first pillar. Yeah. And then also, like, it's a huge problem. It is like a huge financial opportunity. Right. When you have half the population being underserved, like in terms of like the therapies you could develop in the population, you could address, I think, making
Speaker 2
So as we before we close, I've got to say two things. One is one very concrete way, I think, is also for us to use WSIS since we're here and the indicators. So there's an e -health indicator and we all should be helping to encourage those facilitators, which are WHO and ITU, to train on gender representative data. And if we can put that and really have a series of indicators there, I think that that could also maybe start to change things in a cascade way. And another possibility, perhaps, is in a context for any country, is a country that wants to lead and wants to be the first and wants to show how great their science is. The way I think the way to get this point across, perhaps instead of like marching, is to say, we could be the first group ever to do that.
Speaker 1
Yeah. Yeah. And it could also make it work for our population in a way, because also we know in terms of the genome mapping, it all comes from one, basically one white guy. Right. Everything that we know about the human genome, which is super crazy to me. So I think that there's a scientific, you know, gold star to be gotten. And I think that that would be great if there was kind of like, you know, a health data race in that way and that maybe you can start that off and everybody would would follow. So that that's my that's my perhaps positive, not not specific way to end that. I know that people are very, very conscious of time. There are people waiting outside. We're conscious of your time and where you need to go
Oriana Kraft
Thank you so, so much. We'll have the link to this website. This incredible thing that Oriana built. And we're really very grateful for your time and your attention. Thank you.

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