Insight
Bridging the gap: How can design research drive better healthcare outcomes for women?
By Hollie Johnston, Principal – Human Factors & Research at PDD, a global product and experience consultancy
It can no longer be argued that there is a data gap in women’s healthcare – with most available data historically biased towards men.
The underrepresentation of women in clinical research, often due to complexities of hormonal cycles has led to a lack of knowledge about drug impact on women.
Minimal research into support solutions for those suffering from endometriosis — which affects roughly 10 per cent (190 million) of reproductive-age women and girls globally — or the lack of consideration for physiological differences in load-bearing that lead to higher failure rates of certain hip implants in women than men, are just a few examples of how healthcare systems, shaped by incomplete data, have failed to address women’s specific needs, with consistent negative impacts on healthcare outcomes.
This data gap has huge implications for developing healthcare products, systems, and services.
It reinforces everyday experiences of bias and leads to unconscious bias when relying on Big Data. As AI technologies that emulate human intelligence and problem-solving capabilities advance, the risk of perpetuating inequality through incomplete and inaccurate datasets grows.
Designing better for women
As Caroline Criado Perez beautifully puts it in her book Invisible Women, “When designing, we need a woman in the room”.
From a design research perspective, this means considering the abilities, actions, and opinions of the intended user profile throughout the development process.
Even with the best of intentions, we cannot live another person’s experiences nor physically put ourselves in their shoes. If we tried, our conclusions would naturally be based on our experiences and understanding (inherent experience bias).
Including those with lived experience is a priority when planning research, not least when it comes to designing for women.
Consider a chronic condition such as endometriosis, which has a significant impact on the lives of sufferers.
Symptoms can vary from painful menstrual cramps and heavy menstrual bleeding, through to fatigue, and inability to get pregnant.
Symptoms can vary in type and severity over time – both during a monthly cycle, and over life stages.
Only by immersing ourselves in the lives and experiences of these women over an extended period can researchers and designers hope to understand the complexity of their needs, and therefore develop innovative and practical solutions that truly address them.
The woman in the room: Participant identification
As practitioners, delivering inclusive, user-driven solutions is at the heart of what we do.
A key component of development is identifying the correct stakeholders, identifying their needs and validating potential solutions with them.
This is where it becomes tricky.
On paper, proportional representation (where the proportion of participants recruited reflects the current real-world status) might seem like a valid method when recruiting.
In reality, in areas currently male-dominated, such as when researching ergonomics for cardiac surgeons, the needs and requirements of a much smaller female cohort would be significantly diluted, with potentially negative consequences in terms of device, system and service usability for women.
Therefore, participants should be selected on a case-by-case basis, using proportional representation as a starting point rather than a standard.
Building the stage: Study Setup
There are many ways to conduct design research and the method chosen should be relevant to the investigation topic. For example, evaluating a surgical tool might be best done in a surgical setting (or simulation lab).
Similarly, the setup of the evaluation should consider who is being evaluated.
Alzheimer’s, for example, is a disease that can be exacerbated by stress or change – such as the introduction of new people, activities, or equipment, all factors which are relevant to a research study.
When it comes to gender and sex, cultural and social factors might also be at play.
It may be inappropriate in some cultures, for example, for a woman to attend a solo face-to-face session or to speak to strangers about intimate health matters.
Study methodology is, therefore, critical to success.
When designing study methodology, it is important to consider not only technical objectives but also user profiles to ensure all demographics are adequately represented and evaluation methods do not negatively impact participation or study results.
Questioning your Insights: Translation & Analysis
Gathering the data is only one part of the puzzle; just as important is how we translate it and incorporate it into the development cycle to create actionable insights and form parameters for idea generation and selection.
At this stage it is all-too easy to fall back on assumptions and internal ‘knowledge’.
Instead, we should assess all ideas against the findings of our research to ensure they are grounded in actual user needs.
We must interrogate those ideas to understand what need they are meeting and why they are valuable.
We should also conduct an analysis to understand whether there are differences – or alignments – between cohorts and sub-cohorts.
Even within women’s health there may not be a ‘one size fits all’ solution. Take pregnancy tests, for example.
It can be safely assumed that taking a pregnancy test is an emotive time for most women; the result received, however, can be very polarising dependent on whether the user is actively trying to conceive, or not.
How do we ensure women are supported during this process – before, during and after test taking – when the response to the result can be so different?
The role of design research in shaping a more equitable healthcare future
The data gap in women’s healthcare is real. Not only is our physiology different, but so are our behaviours, attitudes, motivations, and cognition.
Passively relying on existing data or engaging the wrong stakeholders perpetuates the problem and misses opportunities for innovation.
In recent years, the rise of Femtech has opened the possibility to eventually close the data gap with wearable devices and companion apps to address the unmet health needs of women granting passive and active data collection for female-specific conditions (e.g. menopause, fertility, etc.).
But robust processes during product and service design, development, and evaluation remain crucial to ensure women’s distinct requirements are met.
Beyond product development, there is also scope to use design research and, more broadly, Human-Centred Design principles to drive change on a larger scale, influencing education, awareness, and policy.
A focus on organisational ergonomics, for example, applying HFE tools to organisational behaviour, can ensure that women’s needs are considered from the outset.
Crucially, addressing the data gap in women’s healthcare can set the scene to tackle further inequalities across genders, socio-economic groups and cultures.
Only by being aware of data limitations and actively collecting data to counteract them can we ensure we are designing for the right people in the right way and achieve healthcare equity for all.
Black women in the UK want clearer, more accessible breast cancer screening information, research has found.
The study looked at why Black African and Black Caribbean women are less likely than white women to attend breast screening.
Researchers at the University of Surrey held focus groups and interviews with 47 Black African and Black Caribbean women aged 50 to 71.
Women in this age group are routinely invited for NHS breast screening.
The researchers said only 45 per cent of Black women attend screening, compared with 63 per cent of white women.
Anietie Aliu, lead author, postgraduate researcher at the University of Surrey and registered nurse, said: “Diagnosing breast cancer early can dramatically improve a person’s chance of survival.
“Breast cancer screening plays an important role in this by identifying the cancer and ensuring a person receives speedy treatment.
“Despite the importance of screening, Black women are less likely to attend appointments than white females.
“This puts them at risk of a potential cancer being diagnosed late and spreading to other areas of the body. We need to understand what is preventing Black women from attending these appointments and help identify ways to remove such barriers.”
The study found a need to increase awareness of breast cancer screening, especially among women less familiar with the service.
Some women, particularly those born outside the UK, knew little about breast screening before receiving their first invitation.
Others questioned why they needed screening when they had no symptoms.
The importance of trusted conversations was also identified.
Researchers found that some Black women expected their GPs to speak to them about breast screening, particularly before they reached screening age.
Although NHS breast screening is organised through national screening services, researchers said GPs often have established relationships with patients and may be well placed to offer brief advice on preventive care, including breast screening.
Participants called for stronger links between GP practices, breast screening services and Black community champions.
They said this could help women receive trusted information, ask questions and feel reassured.
Faith and religious beliefs also shaped decisions for some women.
Some Black African Christian women said illness, including cancer, was not permitted by God in their bodies, while others saw screening as a personal choice that did not conflict with Christian faith.
Muslim women highlighted the importance of being able to state their religion on medical appointment forms to help ensure they were seen by a female mammographer.
A mammographer is a healthcare professional trained to carry out breast screening scans.
Aliu added: “Breast screening can save lives, but our findings show that attendance is shaped by multiple factors, not just awareness, although awareness remains important.
“Women need relatable screening information, reassurance, flexible appointments and services that are accessible within their communities.
“Many felt that invitation letters were too formal, and that leaflets and media imagery did not reflect them, making it harder to relate to screening.”
Dr Afrodita Marcu, senior research fellow at the University of Surrey and member of the research team, said: “We need a more collaborative approach, where primary care, screening services and community voices work together to support women before, during and after the invitation.”
The researchers said future breast screening interventions should be designed with Black women, rather than for them.
They said user-friendly and culturally relevant resources, developed with communities, healthcare professionals and screening services, could improve understanding, reduce fear and make breast screening feel more accessible and reassuring.
Dr Robert Kerrison, associate professor of cancer care at the University of Surrey, said: “There is no question that breast screening can be lifesaving, but we need to make it easier for women to understand, access and feel reassured by the programme.
“This means improving communication, addressing practical barriers and making sure healthcare professionals and community partners are supported to provide clear and trusted information.”
The team has also explored healthcare professionals’ perspectives and worked with stakeholders to develop user-friendly materials with Black women.
Researchers said this co-designed approach could help ensure breast screening messages are culturally relevant, practical and shaped by the people they are intended to support.
News
“Women’s voices should be heard and pain should never be ignored,” says Wales’s first Women’s Health Minister
Women’s pain should not simply be endured, Wales’s first women’s health minister has said.
Delyth Jewell said she was determined to tackle the normalisation of pain in women’s healthcare and ensure women’s voices are listened to.
Speaking during a Women’s Health Summit at the Temple of Peace on Thursday, July 16, she said: “For too long, women’s health has been treated as an afterthought. No woman should be afraid to speak up about pain or things that don’t feel right.
“Women should be believed about their bodies, and I am determined to change the culture that has let too many women down.”
She added: “Women’s voices helped create the Women’s Health Plan. Now we’re making sure those voices continue to shape what comes next.”
The summit brought together clinicians, researchers and women with lived experience to tackle the normalisation of pain in healthcare and identify how women’s voices can better shape NHS services.
Lived experience means insight from people who have personally gone through a health issue or used healthcare services.
The event focused on pain linked to clinical procedures and long-term health conditions, drawing on research evidence, clinical expertise and women’s personal experiences.
Following the summit, minimum standards for service user engagement will be drafted to ensure women’s voices continue to influence the delivery and future priorities of the Women’s Health Plan.
Service user engagement means involving people who use health services in decisions about how care is designed, delivered and improved.
Work will also begin to refresh and strengthen the plan, including gathering feedback directly from women across Wales.
The NHS Wales Women’s Health Plan was developed after discovery work in 2022, when women across Wales shared their experiences of healthcare.
Many said they had not felt listened to, had symptoms dismissed or had lived with pain for years before receiving a diagnosis.
Hosted by Amanda Ducach, CEO, and Morgan Rose, chief science officer, EmaEQ
Healthcare companies have spent the last two years hearing the same advice: get AI into your product. Few have been told what that actually takes.
Most default to the fastest option. Plug in a general-purpose model, wrap it in a chat window, and call the box checked. It looks like progress on a roadmap slide. It rarely holds up once a real patient is on the other end of it.
We’ve spent years building AI specifically for healthcare, and the lesson that keeps repeating itself is simple: accuracy is not the same thing as trust, and trust isn’t something you bolt on after launch. It has to be part of how the system is built from the first line of code, not a feature added once regulators or users start asking questions.
That distinction is the whole reason clinical accuracy gets treated as a checkbox instead of a discipline. A model can sound confident and still be wrong in ways that matter enormously in a health context.
Knowing the difference, and building for it deliberately, is what separates AI that’s genuinely safe for care from AI that’s simply fast to ship.
On July 20th, we’re hosting a live conversation about exactly this: what companies should be paying attention to before they choose an AI to build with, what clinical accuracy really requires, and the pillars we hold every AI system to before it gets anywhere near a patient’s care.
The Healthcare AI Playbook Webinar: July 20th, 1:30-2pm EST, live on LinkedIn.
Register here: https://www.linkedin.com/events/7482643171823509504?viewAsMember=true
If your team is building anywhere near healthcare, or evaluating what’s already in your product, this is the conversation we think the industry needs right now.
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