{"id":47595,"date":"2020-05-22T08:07:55","date_gmt":"2020-05-22T07:07:55","guid":{"rendered":"https:\/\/blogs.bmj.com\/bmj\/?p=47595"},"modified":"2020-06-01T08:04:44","modified_gmt":"2020-06-01T07:04:44","slug":"mary-higgins-we-must-learn-from-the-experiences-of-people-who-have-had-covid-19","status":"publish","type":"post","link":"https:\/\/blogs.bmj.com\/bmj\/2020\/05\/22\/mary-higgins-we-must-learn-from-the-experiences-of-people-who-have-had-covid-19\/","title":{"rendered":"Mary Higgins: We must learn from the experiences of people who have had covid-19"},"content":{"rendered":"<p class=\"standfirst\">Don&#8217;t forget that behind <span style=\"font-weight: 400\">every study and statistic is a person<\/span><\/p>\n<p><!--more--><\/p>\n<p><span style=\"font-weight: 400\">Seventeen days before my membership written examination in 2004, my daughter was born. Despite being fit, healthy, and \u201clow risk,\u201d I developed pre-eclampsia at 29 weeks, necessitating her birth at 31 weeks and seven weeks admission to the neonatal intensive care (NICU) and special care baby units. Thankfully she did well, passing most of the milestones of prematurity and growing into an engaging, wonderful, cheeky teenager. I never had another child.\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400\">After she was born, I passed the examination, how I don\u2019t really know. I went on to finish my training in Ireland, then travel to Canada to train in maternal-fetal medicine, a branch of Obstetrics that deals with high risk pregnancy. In this role, I have cared for many women who develop pre-eclampsia, who required high dependency and intensive care, women whose pregnancies were changed like mine on what felt like a flip of the coin. With my personal experience I have always been interested in the <\/span><a href=\"https:\/\/obgyn.onlinelibrary.wiley.com\/doi\/full\/10.1111\/1471-0528.15616\"><span style=\"font-weight: 400\">personal side<\/span><\/a><span style=\"font-weight: 400\"> of this medical condition, on how it affects <\/span><a href=\"https:\/\/www.tandfonline.com\/doi\/abs\/10.1080\/01443615.2019.1615040?journalCode=ijog20\"><span style=\"font-weight: 400\">women<\/span><\/a><span style=\"font-weight: 400\">, <\/span><a href=\"https:\/\/www.ncbi.nlm.nih.gov\/pubmed\/21547089\"><span style=\"font-weight: 400\">couples and their families<\/span><\/a><span style=\"font-weight: 400\">, on the psychology of grief, resilience, and hope.<\/span><\/p>\n<p><span style=\"font-weight: 400\">In January of this year, as part of a research project with the Science Foundation of Ireland, a group of us were asked to undergo a Stakeholder Discovery project, where we would interview at least one hundred people who had been affected with pre-eclampsia. The idea was that we\u2014scientists and clinicians\u2014would learn from listening, using open ended interviews to discover the things we didn\u2019t know about our area of so-called expertise. We reached out to colleagues and to women, couples and families with the disease, directly and indirectly through social media using the hashtag #myPETexperience. We talked to colleagues who were expert in PPI (public patient involvement)\u2014and reviewed <\/span><a href=\"https:\/\/www.hrb.ie\/funding\/funding-schemes\/public-and-patient-involvement-in-research\/\"><span style=\"font-weight: 400\">guidance<\/span><\/a><span style=\"font-weight: 400\"> to how we <\/span><a href=\"https:\/\/www.invo.org.uk\/\"><span style=\"font-weight: 400\">could best approach this<\/span><\/a><span style=\"font-weight: 400\">.\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400\">The response was incredible. Women, partners, clinicians and even adult children of affected women reached out to tell us their stories. We heard accounts of the worst of outcomes\u2014the death of a mother or baby\u2014and of \u201cgood\u201d outcomes (late diagnosis, prompt response, safe birth of baby, quick resolution for the mother) that nevertheless left women bereft, lost, and with a lack of confidence in the body that they felt had let them down. We spoke to partners about the responsibilities they had\u2014to care for children, maintain normal life and worry about their partner and unborn child\u2014and adult children who spoke of the effect of a \u201ctoxaemia\u201d diagnosis on their mother thirty years before. All taken together, and with the most powerful being the personal lived experience, these accounts completely changed our research plan. It was one of the most powerful learning experiences I have ever had, and has now made me a convert to learn from patients themselves.\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400\">The current major medical challenge is that of covid-19. Research in this area has exploded, making it a major part of our work to keep up and adapt to emerging evidence as it arises. Interestingly, very few of these articles report the patient experience, which is probably not surprising. The option to do a one on one thirty minute semi structured interview with an infected person is perhaps not really feasible, and certainly one most Ethics Committees would query with regard to the safety for the researcher. This does not mean that we should disregard the experiences of people who have been infected with covid-19, as there are learning points there that are as valuable as teaching on how to put on personal protective equipment, or what antiviral therapy is now proposed. On social media people have shared their stories, often with a strong public health message supporting social distancing and cocooning. Stories of coming to the decision to be tested, of the experience of being tested and confirmed, of fear, of facing their own mortality, of admission to hospital or intensive care, of the physical and mental effects of the disease. Stories of guilt if they inadvertently exposed others to the infection. These are powerful and these must be acknowledged, so that we remember to show compassion and kindness while also efficiently caring for those with the infection.\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400\">I can remember sitting in a meeting where a speaker spoke of how fascinating pre-eclampsia is as a disease, to which my only response was \u201c<\/span><i><span style=\"font-weight: 400\">it is, until you get it yourself<\/span><\/i><span style=\"font-weight: 400\">\u201d. It certainly put a damper on that meeting, but I hope that it also reminded people that behind every study and statistic is a person. There is no difference with covid-19, but this is one that affects us all. Let us continue to use all the lessons we have learnt as medical practitioners, and aim to remember the people behind the statistics.\u00a0<\/span><\/p>\n<p><em><b>Mary Higgins<\/b><span style=\"font-weight: 400\"> is an obstetrician working in Dublin.<\/span><\/em><\/p>\n<p><em><b>Competing interests<\/b><span style=\"font-weight: 400\">: None declared.<\/span><\/em><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Don&#8217;t forget that behind every study and statistic is a person [&#8230;]<\/p>\n<p><a class=\"btn btn-secondary understrap-read-more-link\" href=\"https:\/\/blogs.bmj.com\/bmj\/2020\/05\/22\/mary-higgins-we-must-learn-from-the-experiences-of-people-who-have-had-covid-19\/\">More&#8230;<\/a><\/p>\n","protected":false},"author":1,"featured_media":47516,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[18926],"tags":[],"class_list":["post-47595","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-mary-higgins"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.5 - 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