How Care Opinion story authors helped me with my PhD

This guest post is by Emily Parker, a PhD student at the University of Leeds. We are grateful to Emily for sharing her early experience of working with our research community.

My PhD research is focused on how healthcare staff in emergency departments deal with their uncertainty about clinical decisions.  During the Covid-19 pandemic, uncertainty among patients and relatives has also increased: is it riskier to seek emergency care or to stay put? The sharp decline in emergency department attendances during the first wave of Covid-19 led to concerns that patients with serious conditions were not seeking emergency healthcare. As well as looking at how healthcare staff manage uncertainty, I widened my scope to also investigate uncertainty among people who might need emergency care.

I developed a survey to find out how people were most likely to seek healthcare for Covid-19 symptoms, as well as symptoms suggesting emergency situations, throughout the pandemic. As well as patients being uncertain about accessing specific services, I was interested in how people would prefer an emergency department doctor to manage their care, should the doctor be uncertain about the diagnosis.

Working with Care Opinion gave me an opportunity to contact potential participants who had already expressed an interest in supporting research

Some published research suggests that some emergency department doctors refrain from sharing their uncertainty with patients, for fear of appearing incompetent. This lack of transparency may mean that patients are not given the information they need to make a shared and informed decision about their care. For this reason, my survey also investigated whether people would prefer to be told if an emergency department doctor were uncertain about their diagnosis, whether they would like to be involved in subsequent decision-making, and the ultimate decision they would prefer.

The pandemic has made it harder to contact patients for research, and so efficient online data collection methods are becoming increasingly important. Working with Care Opinion gave me an opportunity to contact potential participants who had already expressed an interest in supporting research by joining Care Opinion’s research community. This created an unusual but very welcome opportunity to invite people who I already knew were keen to have their voices heard.

The research community is still at a very early “proof of concept” stage with just 200 members. Following an email invitation to 128 community members, an impressive 67 accepted the invitation, of whom 49 went on the complete my online survey. The experience of inviting the research community to participate in this study was simple, efficient and provided invaluable data for my PhD.

I hope that Care Opinion will continue to develop this idea in collaboration with researchers and others, so that as well as posting feedback, people who “care about care” can contribute to research too. Thank you, Care Opinion!