Killer question: Does data hold the key to solving historic gender inequality in cardiovascular healthcare in Scotland – and around the world
A pioneering partnership between the Digital Health & Care Innovation Centre (DHI) and Research Data Scotland (RDS) will help address long-standing gender inequality in Scotland’s approach to cardiovascular healthcare by harnessing the power of data.
Cardiovascular disease (CVD) is the leading cause of death for women in Scotland, claiming twice as many lives as breast cancer. Despite this, women continue to face significant disparities in diagnosis, treatment, and aftercare when compared to men.
Fran McIntyre, a fit and healthy 49-year-old executive director from Edinburgh, suffered an unexpected heart attack aged 44 in 2021, which doctors initially dismissed as anxiety. Incredibly, the mother-of-two was about to discharge herself and order a takeaway from her phone when doctors told her she was having a heart attack.
“I had no idea I was having a heart attack,” Ms McIntyre said. “Even in hospital, they thought I was fine until blood tests showed otherwise. After being discharged, I was given aspirin and left to get on with it – there was no follow-up care or ongoing support.”
The experience described by Ms McIntyre reflects wider issues across the UK – and globally – highlighted by the 2019 Bias and Biology report by the British Heart Foundation, which revealed that women face poorer outcomes at every stage of cardiovascular care.
Women are more likely to have their symptoms dismissed as anxiety or heartburn and may have up to six times as many appointments as men before receiving an appropriate referral.
The memorandum of understanding (MOU) between DHI and RDS seeks to address these inequalities by supporting academic research and digital health innovation that will help raise the quality and value in women’s health and care data. It is hoped the new partnership will address current data gaps for women's cardiovascular health and drive digital innovation in detection, treatment and care.
“Women’s cardiovascular health has historically been overlooked due to data gaps and systemic biases,” explained Dr Abigail Lyons, an expert in women’s health at DHI. “This is not a challenge unique to Scotland, but by leveraging the nation’s robust health data infrastructure, we aim to close these gaps and develop targeted interventions that improve diagnosis, treatment, and aftercare for women. We hope that what we learn can be rolled out for the benefit of other nations too.”
Scotland’s role as a leader in approaches to women’s health is well established. In 2021, the nation became the first in the UK to publish a Women’s Health Plan and appoint a Women’s Health Champion, Professor Anna Glasier. Measures like the High-Sensitivity Troponin Test, pioneered by Professor Nicholas Mills of NHS Lothian and the University of Edinburgh, have already improved heart attack detection for women.
However, Dr Lyons emphasised that more needs to be done. “We are at the beginning of a long journey, she said. “Systemic change is required, but Scotland’s commitment to prioritising women’s health places us in a strong position to lead the way.”
Key challenges include addressing the underrepresentation of women in clinical trials, improving awareness of cardiovascular risk among women, and ensuring that healthcare innovations do not exacerbate existing inequalities. The partnership will also explore how women can gain greater agency over their health data and decisions.
Ms McIntyre, who is now completely fit and healthy and has had no symptoms or issues since, said that whilst her own experience of inequality was not as extreme as others, she has hope that through continued work such as the DHI-RDS partnership, the inequality gap can be closed in future.
“The fact that we know there’s an issue gives me hope,” she said. “Initiatives like this partnership are exactly the kind of innovation we need. I don’t want other women to go through what I did without the support they deserve.”
By combining data-driven insights with Scotland’s tradition of collaboration and innovation, the DHI-RDS partnership aims to make Scotland a global leader in addressing inequalities in women’s cardiovascular health care.
The benefits of the partnership extend beyond women’s cardiovascular health, with wide-reaching objectives in supporting data strategy, information sharing, communications, signposting and engagement with relevant organisations; developing collaborative projects which enhance Scotland’s digital and data infrastructure; and identifying relevant funding and investment opportunities. The partnership also seeks to encourage and facilitate collaboration opportunities where they are of mutual interest, initially through the Women’s Health Data Exemplar work and Aim4All Phase 2 project, which aims to enhance data collection for evaluating new healthcare products in Scotland.
Layla Robinson, Chief Partnership and Strategy Officer at RDS, said: “Data is a powerful tool, and Research Data Scotland is working to make it faster and simpler for researchers to access public sector data, like health and gender, to enable insights and better evidence-based decisions.
“Partnership working is central to what we do and we’re excited to be working with DHI to help address gaps in research and improve outcomes for people across Scotland.”
Moira McKenzie, Deputy Chief Executive and Director of Innovation at DHI, said: “DHI occupies a unique and visible position at the vanguard of research and digital innovation in Scotland's growing digital health and care sector. We are delighted to collaborate with Research Data Scotland and cross-sectoral partners to demonstrate how digital innovation and data sharing can deliver citizen and system benefits for many such health challenges, not just in Scotland but across the world.”
To learn more about RDS, visit: https://www.researchdata.scot/
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