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.
Ki-67, a protein used to measure tumour growth, may also help prevent chromosome errors that drive cancer, a study suggests.
The findings could change how scientists view Ki-67, a marker commonly used in breast cancer and other tumours to assess how quickly cancer cells are growing.
Researchers found the protein may help preserve genome stability by maintaining the structural integrity of centromeres, key parts of chromosomes that help ensure DNA is shared correctly during cell division.
The research was led by professor Paola Vagnarelli at Brunel University of London in collaboration with scientists at the University of Edinburgh and the Technical University of Berlin.
Professor Vagnarelli said: “Doctors already measure Ki-67 to see how aggressive a cancer might be. But our results suggest it is actually helping maintain genome stability.
“That means it may be more than a marker. It could potentially also be a therapeutic target.”
The study examined three proteins that attach to chromosomes during cell division and help rebuild the molecular system that tells each new cell what kind of cell it is.
Every human cell carries identical DNA. What makes a liver cell different from a brain cell is which genes are switched on and which are kept inactive.
When a cell divides, that entire system of switches must be rebuilt. The three proteins involved in this process were Ki-67, Repo-Man and PNUTS.
Vagnarelli’s team developed a method that individually removes each protein from a living cell at the precise point of division. Older techniques could not isolate that moment cleanly.
They found that cells rely on all three proteins to reset themselves after division, but each failed in a different way when removed.
Without PNUTS, gene activity spiralled out of control and thousands of genes switched on at once.
Without Repo-Man, cells escaped safety checkpoints that usually stop damaged or abnormal cells from continuing to divide.
“What we didn’t expect was how clean the separation was,” said Vagnarelli.
Each protein fails in its own specific way. There is no redundancy, no safety net. Which means there are three separate points at which this process can go wrong.
“When the system breaks down, cells can emerge with the wrong number of chromosomes. That condition, called aneuploidy, is seen in disorders such as Down syndrome and in many cancers.
“We also found that these chromosome errors can trigger inflammatory signals inside the cell.”
Aneuploidy means a cell has too many or too few chromosomes, which can disrupt normal growth and function.
Inflammatory signals are chemical messages that can make a cell behave as if it is responding to injury or infection.
“These cells behave almost as if they are under attack,” said Vagnarelli.
“The immune response switches on because the genome is unstable.
“That link between chromosome imbalance and inflammation could help explain patterns we see in several diseases.”
The researchers said the findings may help cancer scientists better understand how chromosome instability, loss of gene regulation and cells dividing before they are ready contribute to tumour growth.
They said understanding the normal machinery that prevents these errors may help researchers find ways to push cancer cells into making mistakes they cannot survive.
“We now have a clearer map of the machinery that resets the cell after division,” said Vagnarelli.
“That knowledge gives us a starting point for thinking about new therapeutic approaches.”
After more than a decade of campaigning, doctors around the world have agreed to rename polycystic ovary syndrome (PCOS).
It is hoped the new name, polyendocrine metabolic ovarian syndrome, or PMOS, will help end the misconception that the condition is all about cysts, which campaigners say has contributed to missed diagnoses and inadequate treatment.
The condition affects one in eight women, or 3.1m women and girls in the UK, and is linked to hormone fluctuations that can affect weight, mental health, skin and the reproductive system.
The renaming was spearheaded by UK patient charity Verity alongside Professor Helena Teede, director of Melbourne’s Monash Centre for Health Research and Implementation.
It followed 14 years of consultation with clinicians and patients around the world.
The new name was published in a consensus statement on May 12 and announced at the European Congress of Endocrinology in Prague.
The paper states that PCOS should now be referred to as PMOS.
“This is a landmark moment that will lead to desperately-needed worldwide advancements in clinical practice and research,” said Professor Teede.
“It was heart-breaking to see the delayed diagnosis, limited awareness and inadequate care afforded those affected by this neglected condition.”
When doctors first named PCOS in 1935, they thought it was mainly caused by physical changes to the ovaries.
Decades of research have since changed that understanding, with clinicians now agreeing the condition is far more complex.
“What we now know is that there is actually no increase in abnormal cysts on the ovary and the diverse features of the condition were often unappreciated,” Professor Teede added.
“A name change was the next critical step towards recognition and improvement in the long term impacts of this condition.”
The exact cause of the condition is still unknown, though it is thought to be linked to abnormal hormone levels and is associated with insulin resistance and raised levels of testosterone and luteinising hormone.
Insulin resistance means the body does not respond properly to insulin, the hormone that helps control blood sugar. Luteinising hormone helps regulate ovulation.
Common symptoms listed by the NHS include irregular periods or no periods at all, difficulty getting pregnant, excessive hair growth, weight gain, thinning hair, oily skin and acne.
Campaigners have acknowledged that the name change could cause temporary confusion.
“Despite decades of tireless advocacy to improve awareness, we recognised that the risk of change would be worth the reward,” said Rachel Morman, chairwoman of Verity.
“This shift will reframe the conversation and demand that it is taken as seriously as the long-term, complex health condition it is.”
It is also unclear if, or when, the NHS will change the language it uses.
An NHS England spokesperson said: “We routinely review and update content on the NHS website to ensure it reflects the latest clinical advice and will carefully consider these recommendations.
“The NHS will also continue our work to improve women’s healthcare, including for this important group, which involves giving women more choice over their care, bringing down waiting times, and delivering more care in communities.”
Insight
The RESIL-Card tool launches across Europe to strengthen cardiovascular care preparedness against crises
By Women As One
Women As One is proud to have contributed to the development of the RESIL-Card tool as an active Advisory Board member, ensuring that gender equity and the perspectives of women cardiologists were embedded from the outset.
Through strategic input on the project’s design, formal support of its EU4Health funding application, and ongoing participation in advisory activities, Women As One has helped shape both the direction and implementation of this initiative.
By amplifying awareness, facilitating engagement from our global community, and advocating for inclusive representation, we have worked to ensure that RESIL-Card reflects the diverse realities of cardiovascular care and supports more equitable, resilient health systems in times of crisis. Read more about our involvement here.
On the European Day for Prevention of Cardiovascular Risk (March 14), the RESIL-Card consortium proudly announces the official launch of the RESIL-Card tool, a free online resource designed to help hospital cardiovascular professionals and other stakeholders assess and strengthen the resilience of their care pathways — ensuring that lifesaving care remains accessible even during times of crisis.
Available now at https://www.wecareabouthearts.org/resil-card/online-tool/, the RESIL-Card tool offers a structured self-assessment framework for evaluating the preparedness of cardiovascular services and identifying concrete actions to maintain continuity of care when health systems face disruption.
“Cardiovascular care must remain uninterrupted regardless of the challenges health systems face,” said Professor William Wijns, Research Professor in Interventional Cardiology, University of Galway, Ireland, and We CARE – RESIL-Card Coordinator.
“The RESIL-Card tool provides healthcare teams with a practical way to assess preparedness, identify improvement opportunities, and ultimately ensure that patients continue to receive lifesaving care when it matters most.”
Why the RESIL-Card tool was developed
Cardiovascular diseases remain the leading cause of death in Europe, making the continuity and resilience of care pathways a public health priority.
Despite advances in diagnosis and treatment, recent crises – from pandemics to geopolitical instability – have exposed the vulnerability of healthcare systems.
In today’s increasingly uncertain health landscape and global environment, proactive preparedness is no longer optional – it is essential.
The RESIL-Card tool was developed as part of an EU4Health-funded initiative to support organisations providing lifesaving cardiovascular care in strengthening their preparedness, improving coordination, and safeguarding patient outcomes in times of disruption.
The initiative focuses on practical resilience strategies to help health systems anticipate challenges rather than simply react to them.
“Healthcare systems today operate in an increasingly complex and unpredictable environment,” said Ariadna Sanz, Health Policy Manager at the Catalan Health Service (CatSalut).
“Tools like RESIL-Card help shift the focus from responding to crises toward proactively building strong, adaptable cardiovascular care pathways that protect patients over the long term.”
A collaborative and evidence-based methodology
The RESIL-Card tool is grounded in a robust, multidisciplinary development process involving cardiovascular experts, healthcare professionals, public health specialists, patient organisations, and policy stakeholders from across Europe.
Its development combined comprehensive literature reviews and analysis of existing preparedness frameworks with extensive stakeholder consultations and co-creation workshops. Real-world insights from healthcare providers and patient representatives were integrated throughout the process to ensure the tool reflects the practical realities of cardiovascular care delivery. The methodology also included iterative testing and validation phases, allowing the consortium to refine the tool and ensure it is both scientifically rigorous and practical for everyday use.
“From the outset, RESIL-Card was co-created with clinicians, patient representatives, and health system experts to ensure it reflects real-world practice,” said Professor Niek Klazinga, Em. Professor of Social Medicine, Amsterdam University Medical Centre / University of Amsterdam.
“The result is a tool that combines scientific rigour with practical usability, enabling healthcare teams to translate resilience concepts into concrete action.”
What the RESIL-Card tool is and how it works
The RESIL-Card tool is a practical online self-assessment instrument designed for use by a multistakeholder resilience team led by cardiovascular care providers.
Through a structured four-step process, including a questionnaire and guided analysis, users assess the preparedness and resilience of their cardiovascular care pathways and gain a clear understanding of how well their services can maintain care continuity during periods of disruption.
The assessment process helps teams identify existing strengths as well as potential gaps in service delivery.
Based on the responses provided, the tool offers tailored recommendations and examples of best practices to support improvement.
These insights can then inform strategic planning, helping organisations prioritise actions that reinforce care continuity, strengthen patient safety, and optimise the long-term sustainability of cardiovascular services.
Benefits for Key Stakeholders
For healthcare professionals and organisations delivering cardiovascular care, the RESIL-Card tool provides a structured way to strengthen preparedness and crisis-response capacity.
By helping teams assess their existing systems and identify areas for improvement, the tool supports better coordination across services and clinical disciplines.
It also facilitates evidence-based planning and quality improvement initiatives, enabling healthcare organisations to enhance their operational resilience while maintaining efficient and manageable care processes.
“By promoting awareness about strengths and limitations of each system, the RESIL-Card tool will help physicians to understand where improvements are needed and strengthen coordination and planning to face crises,” said Doctor Alfredo Marchese, Chief of Interventional Cardiology Department at Santa Maria Hospital, Bari, Italy and President of the Italian Society of Interventional Cardiology (GISE).
For patients and patient organisations, the RESIL-Card tool contributes to improving the reliability and continuity of essential cardiovascular care.
By encouraging healthcare providers to proactively address vulnerabilities in care pathways, the tool helps promote uninterrupted access to diagnosis, treatment, and follow-up services.
It also supports a more patient-centred and equitable approach to care delivery, encouraging collaboration and transparency in preparedness planning.
Ultimately, these improvements can contribute to better health outcomes and increased safety for people living with cardiovascular disease.
“For people living with cardiovascular disease, continuity of care is not optional — it is essential,” said Teresa Glynn, Senior Executive Strategy & Partnerships at Global Heart Hub.
“By helping healthcare providers strengthen preparedness, RESIL-Card supports more reliable and equitable access to treatment and greater confidence for patients and their families.”
At the European level, the RESIL-Card initiative contributes to a shared effort to strengthen the resilience of health systems.
By providing a common framework for assessing and improving preparedness, the tool encourages cross-border learning and facilitates the exchange of best practices among healthcare providers and policymakers.
It also aligns closely with European Union priorities on health system preparedness, crisis response, and sustainability.
By helping healthcare organisations identify vulnerabilities and implement practical resilience measures, the RESIL-Card tool can support efforts to reduce inequalities in access to high-quality cardiovascular care across EU Member States.
“Strengthening the resilience of cardiovascular care is a shared European priority,” said Rachel Kenna, Ireland’s Chief Nursing Officer at the Department of Health.
“While the RESIL-Card tool has not yet been tested in an Irish setting we look forward to seeing how it can support the development of more sustainable and prepared healthcare systems.”
Call to Action
Cardiovascular care providers and other healthcare professionals are encouraged to explore the RESIL-Card tool at https://www.wecareabouthearts.org/resil-card/online-tool/.
By using it to assess their cardiovascular care pathways, they will identify areas where resilience can be strengthened and ensure that essential services remain accessible during times of disruption.
Patient organisations also play an important role in this effort. By engaging with healthcare providers and policymakers, they can help promote the use of the tool and ensure that patient perspectives are meaningfully incorporated into preparedness and response planning.
Policymakers and health authorities are invited to support the adoption of the RESIL-Card tool within regional, national and European strategies aimed at strengthening healthcare system resilience.
Integrating the tool into policy frameworks can help safeguard access to essential cardiovascular services and enhance the ability of health systems to respond effectively to future challenges.
Learn more about Women As One at womenasone.org
Entrepreneur3 weeks agoFuture Fertility raises Series A financing to scale AI tools redefining fertility care worldwide
Entrepreneur2 weeks agoWomen’s digital health market set to reach US$5.28 billion in 2026 – report
Diagnosis4 weeks agoFuture Fertility partners with Japan’s leading IVF provider, Kato Ladies Clinic
Diagnosis3 weeks agoNew meta-analysis further supports low re-excisions and high placement accuracy with the Magseed marker
Mental health3 weeks agoLifting weights shows mental health and cognitive benefits in older women, study finds
News3 weeks agoResistance training has preventative effects in menopause, study finds
Pregnancy3 weeks agoNIPT or NT scan? Why the 2026 evidence supports doing Both
News4 weeks agoRelaunched women’s health strategy aims to tackle ‘medical misogyny’