The Power of Data and Patient Voices
Driving meaningful decision-making in migraine policy
Interview with Davide Lovera, Senior Researcher, WifOR
& Nelleke Cools, Director, Hoofdpijnnet
WifOR is an independent economic research body that collaborates with international partners from public and private spheres to pursue a sustainable social, environmental, and economic development of global society. WifOR conducts research in areas of labour markets, sustainability and health, seeking to initiate public discourse and developing valid, comparable data to make evidence-based decisions. *
Hoofdpijnnet is a patient association that strives for a world in which headaches no longer determine a person’s daily life. It aims to be a safe place for people experiencing all types of headaches to ensure that they are understood, find answers and ideas, and stay up-to-date. Working alongside volunteers, members, and partners, the association is committed to improving headache care, recognizing the impact of severe headaches, and supporting people with headache disorders since 1981.
* AbbVie collaborated with WifOR on a recent study – ‘The socio-economic burden of migraine: The case of 6 European countries‘ – examining the SOB of migraine in Czechia, France, Italy, Germany, Spain, and Portugal.
To introduce us to Hoofdpijnnet, can you tell us a little about the association and the type of work that you do?
Hoofdpijnnet is a Dutch patient association with approximately 4,500 members who experience migraine, cluster headaches, facial pain, and tension headaches. Our activities include organizing webinars and meetings, hospital information sessions with headache centers, engagements with policymakers and the pharmaceutical industry, regular newsletters to keep our members informed, and nature walks throughout the country. Beyond providing information, we run various projects with neurologists focusing on lifestyle changes and shared decision-making in the consulting room. We work hard to improve the doctor-patient relationship, so patients become equal partners in their care rather than passive recipients. Central to our vision is integrated headache care that involves not just neurologists but also GPs, physiotherapists, psychologists, dietitians, and headache nurses. We emphasize that medicine is not the only solution and that headache treatment is highly individual (1). For each person, finding the right approach is a quest involving trial and error, and we support patients in discovering what works best for them while empowering them to take an active role in their own care.
I know that the association also works in collaboration with professional societies, other patient groups and industry, can you tell us about why you think working together can support building a burning platform for action?
Well for one, we share the same goal – better headache care in the Netherlands, better medicines at affordable prices, and addressing critical issues such as medication overuse in headache. This is an underestimated problem; approximately half of chronic migraine patients actually have medication overuse headache from taking too much medicine over years and years (2). We think it's very important to address this, but very often the GP doesn't have enough knowledge about migraine, and referral pathways between GPs and specialists are not always clear or implemented (3). When it comes to industry, I think we can really help each other. I find that industry is aware of the importance of prevention, lifestyle changes, and work-related themes. And here's something interesting: if we all succeed together in reducing the number of people with headaches, then governments will be less afraid to provide access to medicines because they won't worry as much about the costs. There's benefit for everyone in working together.
I also noticed that Hoofdpijnnet regularly conducts patient surveys, how do you see this type of information generation informing your association’s goals and focus for advocacy?
Conducting patient surveys is important for us, first and foremost, to have more information about headache patients—what are their sorrows, their struggles, what do they need, what kind of support can we offer? It gives us information that helps us do the right things as an association. At the same time, I think it's interesting information for companies, governments, and policymakers to alert them of the urgency. Our data is openly available for others to use. A prime example is our 2021 survey on the economic impact of migraine in the Netherlands, which is still regularly cited by industry, policymakers and researchers. Beginning this year, we're launching structured surveys two to three times annually. This consistent data collection strengthens our value as a partner—particularly for pharmaceutical companies and academic researchers—since we can provide access to a large patient panel and Facebook community. This is significant given that an estimated 2 million people suffer from migraine* (4), with about 60% taking more than a year before they see their GP (5).
*Based on a prevalence of 15% on the CBS-population figures for 2018 (ca. 17,2 million inhabitants), it can be estimated that about 2.58 million people in the Netherlands had migraine during that period. This percentage is often applied to map the disease burden of adult migraine.
Shifting gears slightly, but staying on the impact on a person’s life, Davide – you recently led a piece of research looking at the socioeconomic burden of migraine, can you provide us with a couple of highlights?
What really struck me in this study is the sheer scale of the economic impact - we're talking about €35 to €557 billion in productivity losses across six European countries over a decade. To better understand those losses, if we compare them to the GDP of the 6 European countries in scope, we are talking about losses ranging from 1.20 to 2% of the GDP. Simply massive losses that pose a real economic challenge to those European countries in comparison to their economic capacity. A second impressive point was the importance of the gender disparity, which was particularly concerning - women experience roughly twice the productivity losses of men overall, and when it comes to unpaid work, they're hit 4 to 9 times harder. This really shows that migraine isn't just a personal health issue - it's a major economic challenge that disproportionately affects women during their prime working years* (6).
*Research funded by Abbvie.
The data brings together a variety of proof points, can you tell us a little about the methodology behind it?
First of all, it's important to say that we at WifOR, as health economists, have a mission: we want to shift how health is perceived. Unfortunately, it's still seen as a cost factor, but we'd like people to understand that health shouldn't be viewed as a cost - it should be seen as an investment. Because investing in health doesn't just mean healthier individuals; it means economic growth and prosperity for entire societies. To show the real importance of this, we analyze everything from a societal perspective, meaning we make the value of health visible from a macroeconomic perspective. We capture not only the direct costs but also the effects throughout the entire value chain of a country's economy. As a core principle, we measure how much migraine reduces people's productivity during paid work activities - where individuals spend most of their day - but crucially, we also evaluate productivity lost in unpaid work activities. This is extremely important, especially for a disease like migraine, where the socioeconomic burden is twice as high in women as in men. This happens because women perform significantly more unpaid work than men, leading to 4 to 9 times more productivity lost due to migraine compared to men in the 6 European countries analyzed (6). This reveals a reality that's completely hidden in classical economic evaluations.
Did you find something surprising about migraine while conducting the research?
What really surprised me was that migraine consistently showed a higher economic burden than both cardiovascular disease and diabetes mellitus across most of the countries we studied. You'd naturally expect CVD and diabetes, which can be fatal and have serious complications, to have a larger economic impact. But migraine actually imposed the highest overall economic burden when compared to these other major chronic conditions (6). This highlights the importance of allocating healthcare resources properly. Investing in comprehensive migraine care - better diagnostics, preventive treatments, workplace accommodations - could potentially recover billions in economic productivity while transforming the lives of millions of workers. It's about smart investment, not just more spending.
Perhaps, this is a good opportunity to shift and consider some of the key data that Hoofdpijnnet has developed. What do you believe that policy- and decision-makers should be aware of and consider when taking policy decisions on conditions like migraine?
Our 2020/2021 research on the economic burden of migraine in the Netherlands revealed striking results: migraine costs between 2.3 and 4.2 billion euros annually (7). This figure specifically represents productivity losses—the collective cost to companies and institutions when employees are unable to work due to migraine. This data is critical for policymakers and decision-makers. When considering healthcare policy for conditions like migraine, understanding this substantial economic impact is essential for making informed decisions about treatment access, healthcare resources, and prevention strategies.
It takes a lot to make meaningful change in the day-to-day realities for patients, where do you see the value of this type of data for political leaders, employers, or healthcare system decision-makers?
This type of data is incredibly powerful because it transforms migraine from an "invisible" personal problem into a quantifiable economic crisis that decision-makers can no longer ignore. When you can show that migraine costs up to 2% of a country's GDP, suddenly it's not just a health issue, it has broader economic implications. Politicians understand GDP losses and productivity drains in ways that patient stories alone might not convey.
That's true, but I think the most powerful advocacy combines both data and personal stories—they're not interchangeable but complementary. Numbers and surveys are essential for gaining media attention and credibility, but personal testimonials often create deeper impact. While statistics such as "two million people suffer from headaches" provide scale, a story about someone missing the meal at their own wedding due to migraine resonates on a human level and reveals the pain behind the numbers.
This data gives them the economic justification to push for policy changes, whether that's better insurance coverage for preventive treatments or funding for workplace accommodation programs. Smart companies realize that investing in migraine-friendly workplaces and flexible schedules isn't charity; it's protecting their productivity. Even a modest reallocation toward migraine prevention could yield meaningful returns in recovered productivity, particularly for the working-age population. Ultimately, this data gives all these stakeholders a common language - euros and GDP percentages - to discuss what has traditionally been dismissed as "just a headache."
Yes, data opens doors and commands attention, but personal stories bring the reality to life. Together, they reach policymakers, employers, and healthcare decision-makers in different but equally important ways, making the combined approach far more effective than either alone.
One thing that we noted, which may not be a surprise to you, but which may be surprising to some of our readers, is that migraine heavily impacts women, meaning women also shoulder the socio-economic burden. What do you think would be especially useful for women who experience migraines for their colleagues, friends or family to understand?
It's important for women to talk about migraine, though they often don't. Women may experience more guilt than men when managing their condition. There's a Dutch saying, "alle ballen in de lucht houden"—keeping all the balls in the air, like a juggler. Many women try to be there for everyone—their partner, children, friends, work, household—except themselves. When migraine strikes, the first things they sacrifice are social contacts, hobbies, and self-care activities such as going for walks. Work often remains the priority because it feels meaningful and necessary.
It can take years before some patients accept migraine as a serious condition, and even then, many see medication as the only solution. We emphasize that effective management requires lifestyle adjustments and conscious life choices, not just medication. Finding balance between work, migraine, and personal life is crucial. We base our approach on the positive health model, which helps individuals identify their unique health priorities—what works is different for everyone.
During the recent Brain Innovation Days, we heard a lot about the brain being a strategic asset for Europe and the need for holistic approaches to understanding how brain health impacts our lives. If you had a wish that politicians could grant when thinking about your experience in data-driven research, what would be useful for them to consider when using such research in practice?
The most important change would be for politicians to truly understand migraine's socioeconomic impact. It's not just a health issue—it affects work, education, family life, everything. When they grasp the full scope of how migraine disrupts people's lives and the economy, they can make better decisions.
Absolutely. If I had one wish for politicians using this kind of research, it would be for them to embrace long-term thinking when making health investment decisions. The challenge we face is that we can demonstrate the costs of migraine, but politicians often need wins within a year or so. When migraine costs countries so much annually, the potential savings from proper investment are enormous - but they unfold over years, not months.
And equally critical is recognizing the patient's role. Patients should not be excluded from decision-making while neurologists and occupational physicians discuss their care behind closed doors—decisions must be made together with patients. Too often, patients are only asked to participate in surveys at the end of a process, not at the beginning. They forget to ask patients from the start: What do you want? What questions should we be asking about healthcare quality? If you don't ask the right questions, you'll never get the answers you are looking for.
And this needs to happen across government departments—currently, there are walls between the Ministry of Work, the Ministry of Health, and the Ministry of Education. Building bridges between these departments would be transformative.
Exactly - We also need better collaboration. Migraine isn't just a health ministry issue - it's an economic issue for the finance ministry, a labor issue for the employment ministry, and a gender equality issue for social affairs. Too often, these ministries work in silos, but our data shows that health conditions such as migraine cut across all these domains. Imagine if the health minister, finance minister, and labor minister sat down together with this data and developed a coordinated national strategy - pooling resources and expertise rather than treating migraine as solely a "health budget problem". This integrated approach would also help politicians understand and see the real value of investing in health and the real return on investing in health.
(1) Raggi A, Leonardi M, Arruda M, et al. Hallmarks of primary headache: part 1 – migraine. The journal of headache and pain. 2024;25(1):189.
(2) Rizzoli P. Medication-Overuse Headache. Continuum (Minneapolis, Minn). 2024;30(2):379-390.
(3) Guerrero AL, Negro A, Ryvlin P, et al. Need of guidance in disabling and chronic migraine identification in the primary care setting, results from the European MyLife anamnesis survey. BMC family practice. 2021;22(1):54.
(4) Steiner TJ, Scher AI, Stewart WF, Kolodner K, Liberman J, Lipton RB. The prevalence and disability burden of adult migraine in England and their relationships to age, gender and ethnicity. Cephalalgia 2003;23:519–527.
(5) Hoofdpijnnet. Weer hoofdpijn? Resultaten online enquête over (ernstige) hoofdpijnklachten (2024). Last accessed: March 2026.
(6) Lovera, Davide and Jasper Ubels. The socioeconomic burden of migraine: The case of 6 European Countries. WifOR. June 2025. Last accessed. March 2026.
(7) Koopmans, Carl and Lucy Kok. Economics effects of migraine. 27 July 2021. Hoofdpijnnet. Last accessed: March 2026.
AbbVie SA/NV – BE-ABBV-260059 (v1.0) – April 2026
About the Authors
Nelleke Cools
As Director of Hoofdpijnnet, and throughout my previous roles, I translate strategic objectives into impactful projects that deliver value to both the organisation and its constituents. My extensive experience in marketing, communication and fundraising enables me to transform aspirations and concepts into concrete, financially viable initiatives.
Davide Lovera
My experience in clinical, research and hospital settings has given me an in-depth knowledge of healthcare systems. Together with my passion and experience in health economics, this is the key that makes companies interested in me. My international experience and passion for languages make it easier for me to integrate into any job or social competition I find myself in.
This article is supported by AbbVie
AbbVie discovers and delivers innovative medicines and solutions that enhance people’s lives. A team of people creating medicines and solutions that put impact first: for patients, communities and our world.
