Most of us are finding the COVID-19 world different and challenging. However, many of us are also finding that this novel situation gives us the opportunity for moments of self-reflection. I now regularly consider how I can improve what I do and how I do it; from diversifying away from the usual culinary formulas to how best to manage the daily wrestle of work commitments vs home-schooling vs quality time.
Listening to patients
In this time when we are supposed to be apart, we are finding new ways of being together and communicating; we are really listening and using our insights to change things for the better. Perhaps now could be an opportune time to reflect as an industry on how we can optimise our projects by listening to our end users, the patients, and building their true stories into projects across the healthcare journey.
Let’s spare a moment for the people with underlying health issues in these turbulent times, especially those involved in research activities. Their reality, behind their ‘locked-down’ doors, is full of concern, risk and increased anxiety that will likely impact their physical and mental health. The issue may be as simple as not being able to access their physician/GP in the usual manner, not having the usual access to their medications as regularly (if at all), or perhaps they are, or feel, unable to complete their research data submission commitments. It can be a daunting new world.
PoTS and COVID-19
The Origins Insights team is working with the charity PoTS UK on a qualitative research project investigating the impact of living with postural orthostatic tachycardia syndrome (PoTS). The remote video ethnography project kicked off in January, with fieldwork starting in late February. So, what is the current PoTS patient reality in the COVID-19 world?
Many participants in the PoTSLIVE project mentioned increased anxiety, which is a concern as stress can trigger symptom flareups. Patients are also worried about access to care or treatment; the difficulties of selfisolation have been raised, as many patients can be bed-bound when symptomatic.
A 31-year-old patient with PoTS, reflecting on the lockdown, said: “This actually really goes to show me how much PoTS and the whole umbrella of autonomic dysfunctions is really overlooked…everyone’s discussing the letters [shielding letters] that they’re all getting and as far as I’m concerned, we don’t fit in any of the categories…If I get any sort of virus, I may get it ten times worse than most other people and that’s really concerning for me. We’ve been completely overlooked as a group of individuals who have been classed as having a disability and we don’t get looked at as vulnerable persons.”
Debbie Waterman, a Research Director at Origins Insights, observed recently: “What we are noticing with our participants in our mobile ethnography projects, who are filming themselves on a daily basis during this uncertain time, is that the anxieties and concerns they experience living with a chronic illness are exacerbated with the additional worry of what impact coronavirus may have on them if they were to catch it. These concerns become very real when we see them etched on the faces of participants, which motivates us all to take action.”
From face-to-face research to mobile research
Another reality of these times is business uncertainty; some projects continue unabated, some slow down, and some halt completely, but people’s lives continue. For those of us in the research world, it’s tough. For good reason; HCP research has been paused and the Market Research Society (MRS) has said: ‘MRS guidance to its members on the grounds of health and safety and public acceptability is that face-to-face research (including mystery shopping) should not be carried out in the current environment.’
However, the virtual world has opened up with mobile research growing in popularity. As a methodology, it is widely activated in the consumer world, and is being applied more frequently by the healthcare industry to uncover the patient journey. This fundamental research gives unbiased and emotive patient truths that can feed new approaches to novel challenges or even some age-old problems.
Most of us want to put patient perspectives at the heart of industry activities across the life cycle of a product. Perhaps now more than ever we need to understand our patients’ new reality, how the situation impacts their immediate care family and what matters most to them, so that all stakeholders can serve them better as we slowly emerge into a new, post COVID-19 world.
