Chronic health conditions that primarily affect women are under recognised and are not prioritised for funding because of New Zealand's failure to record and collect diagnostic information across the health system, a researcher at the University of Otago, Wellington – Ōtākou Whakaihu Waka, Pōneke, says.
Dr Fiona Imlach
Dr Fiona Imlach, a Senior Research Fellow in the Department of Public Health, says most of the country's national health data is collected from public hospitals, so the cost and burden of chronic health conditions, which are mainly managed in primary care, is largely invisible.
This includes many conditions that occur only in women, such as endometriosis, or which are more common in women than men, like anxiety, depression and migraine.
Dr Imlach says information systems used in primary care, outpatient services, medicine prescribing, and for laboratory and imaging tests have not been set up to consistently and accurately record important data such as patient diagnoses, symptoms and test results.
"There is little information available on chronic health conditions which only or disproportionately affect women, making it difficult to monitor the prevalence of disease, patient outcomes and health service performance."
Dr Imlach says poor data collection is contributing to the 'women's health gap', a gender disparity which results in women spending 25 per cent more time in poor health, or with disabilities, than men, according to international research.
In a viewpoint article published in today's New Zealand Medical Journal, Dr Imlach says migraine disease, which affects at least twice as many women as men, is one of the conditions for which information is lacking.
She recently co-authored a study looking at the number of patients diagnosed with migraine at Auckland's largest Primary Healthcare Organisation (PHO), ProCare.
"An analysis of the electronic health records from more than 370,000 adult patients found only 3.8 per cent had a diagnosis of migraine recorded. This is at odds with international estimates and New Zealand surveys on migraine which show a prevalence of around 14-15 per cent."
"A lack of research means we make slow progress in developing new treatments, and a lack of knowledge about the impact of these conditions means there is less incentive to fund any new treatments or tests that do arise." – Dr Fiona Imlach
Dr Imlach says the lack of good health data creates a cycle of invisibility and neglect, where the impact of chronic diseases, like migraine, becomes harder to measure and easy to underestimate.
"A lack of research means we make slow progress in developing new treatments, and a lack of knowledge about the impact of these conditions means there is less incentive to fund any new treatments or tests that do arise."
She says conditions like migraine have a high social and economic impact, adversely affecting women's quality of life and reducing their ability to participate fully and productively in the workforce, and in unpaid labour, such as caregiving and domestic work.
In Spain, researchers estimated the total cost of migraine to the economy (including lost productivity) at between EUR10 and 14 million in 2020, while in the UK migraine was estimated to have cost the public economy GBP12 billion in 2022.
Dr Imlach says New Zealand lacks the basic data needed to estimate how much migraine is costing the country in lost productivity and health care expenses.
"We need major improvements in the way national health data is collected to be able to monitor and reduce the impact of chronic, disabling health conditions on everyone, and on women in particular."
The viewpoint article, 'How can we value what is not measured: the need for better data on women's health and primary care' is published in the New Zealand Medical Journal.
