Mary Higgins: We must learn from the experiences of people who have had covid-19

Don’t forget that behind every study and statistic is a person

Seventeen days before my membership written examination in 2004, my daughter was born. Despite being fit, healthy, and “low risk,” 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. 

After she was born, I passed the examination, how I don’t 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 personal side of this medical condition, on how it affects women, couples and their families, on the psychology of grief, resilience, and hope.

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—scientists and clinicians—would learn from listening, using open ended interviews to discover the things we didn’t 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)—and reviewed guidance to how we could best approach this

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—the death of a mother or baby—and of “good” 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—to care for children, maintain normal life and worry about their partner and unborn child—and adult children who spoke of the effect of a “toxaemia” 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. 

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. 

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 “it is, until you get it yourself”. 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. 

Mary Higgins is an obstetrician working in Dublin.

Competing interests: None declared.