The pandemic data collection challenge
John Gibson and Debra Richards are part of an NIHR-funded trial looking at improving collaborative mental health care. They explain why they decided to continue the trial during lockdown as the UK responded to the COVID-19 pandemic.
How do you conduct research interviews when you are not allowed to meet people face to face? How do you collect research data? This is a question that many research teams have asked themselves over the last few months, including our team on the NIHR-funded PARTNERS2 trial. Unlike many teams conducting mental health research, we decided to press ahead with the work rather than pause data collection.
This wasn’t an easy choice, but we felt we had to find ways to work within the new situation. Across four sites in England, people had signed up to receive mental health support from a mental health practitioner - whom we call a Care Partner - who would meet them regularly over a 10-month period. The focus of the trial was how to make care more collaborative - the participant and the Care Partner would be working together on an equal basis to set goals, with the Care Partner using coaching techniques rather than giving advice. We felt that it was essential to keep this support going during the pandemic.
We have a service user and carer Lived Experience Advisory Panel (LEAP), so seeking their input was vital. Collectively, the team felt it was very important to continue the trial and move PARTNERS2 online. It was decided that Care Partners would provide support via the telephone or online platforms such as Zoom, and the research team would collect follow-up data by phone. The follow-up data collection process was piloted with LEAP members to check what adaptations were necessary. Covid-19 ethics amendments were fast tracked through the sponsor and within two weeks the study was progressing again.
Debra Richards is the Research Assistant on PARTNERS2. She is a member of the Community and Primary Care Research Group at the University of Plymouth.
There are pros and cons to working remotely, particularly over the phone where there is no option to see someone’s face. As a newer member to the research team, I had not met the people I was interviewing before, so I hadn’t had the opportunity to build rapport face to face. It was much harder to engage and build rapport, but I found discussing the Covid situation was usually a good ice breaker.
There are also some emotionally charged questions in our interview which could, at times, cause the participants distress. This could be more challenging to manage when all you have is words for reassurance. One thing I didn’t miss was the back and forth emails with GP surgeries to try and arrange an available room within which to conduct the interview. Additionally, remote working removes the time spent travelling to access the more remote participants.
A Service User Researcher perspective
John Gibson initially became involved with PARTNERS2 as a member of the service user and carer panel (LEAP) and is now a Service User Researcher on the project based at the University of Birmingham, employed by the McPin Foundation. He shared his perspective on the shift to running the trial remotely.
Despite the wide variety of research tasks required of me as a PARTNERS2 team member, as a Service User Researcher I have always tried to put myself in the position of our research participants and reflect on how I would feel at each step of the study programme.
Participants had volunteered to be part of our trial and, as a team, we had a responsibility towards them. I knew from my past experience, when mental health services had withdrawn their support at short notice, that failing to keep in touch now would likely have a really negative impact on people’s mental wellbeing. This was even more of a worry given the great anxiety that the pandemic was causing.
Moving to conducting follow-up interviews over the phone raised some concerns for me, both for myself and on behalf of the participants. Luckily, my anxieties proved unfounded. People were willing to take part and, surprisingly, the sense that we were all going through something unprecedented meant the interviews were, at times, more relaxed and open than those conducted face-to-face.
Deciding to press ahead with the PARTNERS2 trial has shown how research systems, which at times can be difficult to work within, can work efficiently and collaboratively. Opening up your home as a practitioner on a video call to people in ways that were not possible before lockdown - and indeed may have been frowned upon – has helped build a new level of rapport. One that felt appropriate for the collaborative care model that PARTNERS2 is trialling.
Read more about the PARTNERS2 trial and about McPin's involvement. PARTNERS2 is funded by NIHR Programme Grants for Applied Research and supported by the NIHR Applied Research Collaboration South West Peninsula. This blog originally appeared on the McPin website in a longer form.
The views and opinions expressed in this blog are those of the authors and do not necessarily reflect those of the NIHR or the Department of Health and Social Care.