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The PARTNERS2 pandemic data collection challenge

John Gibson and Debra Richards

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 the PARTNERS2 trial that we are part of. Unlike many teams conducting mental health research, however, 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 Covid-19.

More practically the trial, funded by the NIHR, had already had time extensions and we were already behind. We knew we were unlikely to be able to restart the study within our current funding extension if we paused for an indeterminate amount of time. Plus, what would happen to the researchers’ jobs working on the study if we paused?

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 adaptions were necessary. Covid-19 ethics amendments were fast tracked through the sponsor. Within 2 weeks the study was progressing again. We decided to test out this new way of working for a period of 6 weeks and then submitted a detailed report to the funder to show how we had adapted PARTNERS2, so they could decide if we could continue the trial. Thankfully they said yes!

Here are some reflections from the research team on what worked:

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. I feel some of my calls would have benefitted from this as some – not all – felt a little cold and distant. I was having to work much harder to engage and build rapport, but I found discussing the Covid situation was usually a good ice breaker.

When you are not in front of somebody, it can be very difficult to sense their response to the interview questions. There were some emotionally charged questions in our interview which could, at times, cause the participant distress. I found this more challenging to manage when all you have is words for reassurance. With the self-report questionnaire, it sometimes didn’t feel right when I was asking people to choose between several options on a scale. If we were face to face, people would have able to read off the scale rather than having to hold the options in their memory.

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 access the more remote participants.

Overall, I think remotely gathering data has been ‘successful’ in that we were able to follow-up with people and thank them for their contribution to our study. Would I choose it over face to face interviews? Probably not, but in the current climate, it is a safe and practical way to continue collecting important data.”

 

John Gibson initially became involved with PARTNERS2 as a
LEAP member and is now a Service User Researcher on the project based at the
University of Birmingham

“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.

After taking consent and completing baseline measures, people who were randomised to the control arm of the trial received a letter informing them they would be contacted again for follow-up in about 10 months’ time. They would have no contact with us in the meantime. Follow-up appointments for five participants in the control arm at the Birmingham site were still outstanding when lockdown began. I felt it was particularly important to attempt to complete these under the new, extraordinary circumstances to which we were all now having to adapt. 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 peoples’ 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. How would I feel not being able to see the person I was talking to? How would it work with me not being able to notice subtle changes in their body language, which might suggest a need for a break, for example? How would I be able to explain a 5- or 7-point scale adequately over the phone without giving the person something to look at? Then there was the simple fact that I would be calling someone who I had never spoken to before or had only met once face-to-face a year ago. If I were a participant, I was unsure how I would I feel about this.

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. In a recent LEAP meeting where we reflected on the experience, one Care Partner spoke about how they were building relationships differently with participants. 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 – had 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 the National Institute for Health Research (NIHR) Programme Grants for Applied Research (RP-PG-0611-20004, NIHR200625). The views expressed are those of the authors and not necessarily those of the NIHR or the Department of Health and Social Care.