Delays in diagnosis are well-documented across women\u2019s health, and many patients report feeling disbelieved or having their symptoms minimised.<\/p>\n
It\u2019s one thing to suffer chronic, debilitating pain and struggle to access appropriate treatment for it. It\u2019s quite another to have symptoms dismissed by the doctors who are supposed to help. \u201cThings like symptom minimisation, normalisation and dismissal \u2013 we commonly call that medical gaslighting\u201d, elaborates Jenny Cooney-Quane, a Research Associate in the School of Applied Psychology at University College Cork (UCC).<\/p>\n
She and her colleague, Dr Sarah Foley, a lecturer at the School, have just launched a landmark study on women\u2019s experiences seeking diagnosis for chronic health conditions.<\/p>\n
\n \u201cWe\u2019ve been doing research into women\u2019s health for a couple of years now at the School of Applied Psychology\u201d, says Dr Foley. \u201cAnd we always have stories repeated back to us about diagnostic delays… I think it\u2019s very well established that there\u2019s lots of gaps in women\u2019s health research and understanding, and what\u2019s been really positive in the last few years is to see more attention paid to that.\u201d\n <\/p>\n
This new focus on women\u2019s health, however, has raised questions about what can be done to narrow the gender health gap and ensure a more positive experience for women seeking diagnosis. This study aims to assist with this.<\/p>\n
The researchers are seeking responses from women, non-binary individuals, and trans men who suffer with endometriosis, migraines, postural orthostatic tachycardia syndrome (POTS), premenstrual dysphoric disorder (PMDD) and mast cell activation syndrome (MCAS).<\/p>\n
These conditions are known to have long diagnostic delays and are often comorbid with each other, meaning that people with one will frequently also have one of the others.<\/p>\n
\u201cWhat we\u2019re really interested in is the experiences that women have when they\u2019re seeking diagnosis,\u201d explains Cooney-Quane. \u201cThere is a good bit of research already around endometriosis, but there\u2019s less data in an Irish context on the other health conditions.\u201d<\/p>\n
As lead researcher and principal investigator of the project respectively, Cooney-Quane and Dr Foley worked closely with a Patient and Public Involvement (PPI) panel \u2013 made up of members of the public and patients with the chronic conditions under consideration \u2013 to ensure they are fully involved in every step of the study. The researchers describe the PPI panel\u2019s involvement as \u201cinvaluable in guiding the study\u2019s design, ensuring it reflects patient lived experience and priorities\u201d.<\/p>\n
\u201cSo many of us were told our debilitating, life-ruining symptoms were normal\u201d, one member of the PPI panel \u2013 who chooses to remain anonymous \u2013 shares. \u201cNothing to be concerned about, just anxiety. You can spend a decade trying to get someone to take you seriously and then spend three years on a waiting list to be seen by someone else and still be dismissed\u201d. The panel member describes this study as \u201cso important and so validating\u201d.<\/p>\n
The research will also explore how Irish women use symptom-tracking apps to document their health experiences. Many of the chronic conditions under consideration as part of the study are linked to the menstrual cycle, for which numerous tracking apps exist and are used daily by women.<\/p>\n
The researchers are keen to investigate how such apps can be used as part of the pathway to diagnosis.<\/p>\n
\n \u201cSymptom-tracking apps could have a huge potential for tracking the symptoms of these conditions across the menstrual cycle and can be really helpful to bring to the doctor when seeking diagnosis,\u201d explains Cooney-Quane.\n <\/p>\n
\u201cWe\u2019re interested in doctors\u2019 reactions to being shown this data because some doctors are really open to it, whereas others aren\u2019t interested or don\u2019t have the time or understanding to look at the data.\u201d<\/p>\n
The Health Innovation Hub at UCC recently identified the FemTech industry as one with significant economic potential in Ireland, with opportunities existing to integrate health technologies into national innovation strategies for women\u2019s health.<\/p>\n
Cooney-Quane and Dr Foley hope that symptom-tracking for chronic conditions could be one such opportunity, and intend to use the findings of the study to make recommendations to health providers and tech developers on how these apps could be used and improved.<\/p>\n
\u201cThere is important innovation taking place,\u201d explains Dr Foley. \u201cAnd we just want to ensure that we\u2019re contributing the evidence to support any kind of technology development\u201d.<\/p>\n
Other aims of the study include achieving a sense of scale of the problem of diagnostic delays and symptom dismissal in Ireland, and making recommendations to public and private healthcare providers on addressing the gender health gap.<\/p>\n
The researchers are looking for a wide range of experiences to build an accurate picture of the current landscape \u2013 this includes positive interactions with healthcare professionals, from which best practice examples can be derived.<\/p>\n
As Cooney-Quane explains: \u201cWe are not coming at this from a negative point of view. We are really interested in what doctors are doing well and feel like we can learn from that.\u201d<\/p>\n
The researchers are keen to stress that they are also seeking input from non-binary individuals, trans men and women from minority ethnic groups \u2013 populations who are historically marginalised even further within health systems.<\/p>\n
\u201cWe know there\u2019s massive gender bias in healthcare for women,\u201dnotes Cooney-Quane, \u201cbut if you are from a gender or ethnic minority, these challenges are just compounded\u201d.<\/p>\n
Views are also welcomed from any patient who has sought healthcare via the private or public system, or who has travelled abroad for diagnosis or treatment.<\/p>\n
Patients on the PPI panel are enthusiastic about this research, and hopeful that it will make strides in the advancement of women\u2019s health in Ireland.<\/p>\n
One member of the panel said: \u201cThis long-overdue research is crucial in finally addressing the persistent healthcare barriers women face. My symptoms began in childhood but weren\u2019t diagnosed until my 40s. Finding effective consultant care took years of personal effort and research. The healthcare system remains outdated, inconsistent, and largely unsupportive of women \u2013 it needs reform.<\/p>\n
\u201cHopefully, the results of the research will expose the areas that are letting women down during their vulnerable periods of ill health.\u201d<\/p>\n","protected":false},"excerpt":{"rendered":"Delays in diagnosis are well-documented across women\u2019s health, and many patients report feeling disbelieved or having their symptoms…\n","protected":false},"author":2,"featured_media":98036,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[34],"tags":[103,397,396,61,60,61069],"class_list":{"0":"post-98035","1":"post","2":"type-post","3":"status-publish","4":"format-standard","5":"has-post-thumbnail","7":"category-healthcare","8":"tag-health","9":"tag-health-care","10":"tag-healthcare","11":"tag-ie","12":"tag-ireland","13":"tag-wow"},"_links":{"self":[{"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/posts\/98035","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/comments?post=98035"}],"version-history":[{"count":0,"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/posts\/98035\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/media\/98036"}],"wp:attachment":[{"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/media?parent=98035"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/categories?post=98035"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/tags?post=98035"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}