Case study: Critical care research nurse’s experience of being a research participant on COVID-19 antiviral trial

“I have worked in research for around five years and this is the first time I have been on the other side of research as a participant. I was feeling ill and had tested positive for COVID-19 when I saw the tweet from CRN Kent, Surrey and Sussex about the PANORAMIC trial. I thought being on the trial might help my symptoms, plus I would also be making a valuable contribution. I completed the online form on the trial website, and then was phoned by the study team a few minutes later.

“The focus of this study is on preventing people from requiring hospitalisation for COVID-19 which appealed to me; obviously there is a slightly selfish element to joining the trial because I wanted to reduce the impact of my symptoms and reduce the likelihood of ending up in a hospital bed. But like many of us I have also experienced the pressures on the hospitals first-hand throughout the pandemic, and this remains ongoing.

“My team and I were not redeployed to frontline nursing but continued carrying out research during the pandemic, bringing trials such as RECOVERY and REMAP-CAP to COVID-19 patients within Intensive Care Units (ITU). I feel a moral obligation to offer research opportunities to COVID-19 patients coming into ITUs, gaining their consent directly or via their families.  On the whole, the patients have been very receptive to participating in research. This is partly to help themselves and also a sense of duty to society by helping patients in the future. This is why I wanted to take part in the PANORAMIC trial.

“I was randomised to receive molnupiravir. I was aware that molnupiravir was not a new drug and that it has been repurposed to treat COVID-19. It has been used inside and outside of trials to treat other conditions. I also know that it has been used recently for patients in high risk groups who are referred by their GP, to prevent them from being hospitalised. My treatment was couriered to me the next day and for the next five days I took four capsules twice a day.

“As a research nurse, being on the receiving end of research is like being on the wrong side of the bed, it was a very odd feeling. I told the nurse from the PANORAMIC study team that I was a research nurse and that I understood what she was saying when she was explaining how randomisation works. I could relate to her when she randomised me to the treatment arm, because she expressed the same excitement as I feel when I randomise my patients. I am always so pleased to reveal the outcome of a randomisation to the patients!

“I appreciated the personal contact with the nurse from the study team which took place over the phone rather than online. This did reassure me. I did not feel at risk as I was being monitored by the team, and I had access to the team 24 hours per day if I needed it.  I had a couple of follow up calls from the team in the first few days of treatment to check if I am experiencing any side effects. I also have to complete an online diary for 28 days to record any effects.
 
“Patients I encounter on a daily basis in ITU do not often have the mental capacity to consent to research, which means the pre-randomisation conversation, like I had for PANORAMIC, is not possible.  However, when I see patients afterwards for follow up appointments, or for retrospective consent once they are feeling better, they welcome that personal contact. Sometimes a five minute check-up can take closer to an hour as they want to talk about their experiences and how they are feeling. My participation in PANORAMIC has affirmed more than ever the need for personal contact.

“I would definitely participate in future clinical trials. I’m pro-research and I’ll put my money where my mouth is. Some members of the public are anxious about research, sometimes suspicious, and I want people to trust research and see it as a positive experience. It is an altruistic gesture when someone agrees to take part in research which does not always benefit them, but will benefit others in the future. That is why research is an amazing area to work in, and take part in.”