Challenge accepted! Patient and Public Involvement during COVID-19

As we restart non-COVID-19 research, Patient and Public Involvement Leads (PPI) from the NIHR Newcastle Biomedical Research Centre (Kasia Kurowska) and NIHR Birmingham Biomedical Research Centre (Laura Chapman), discuss patient and public involvement partnership work during the continuing pandemic.

ADMISSION is a new research collaborative, designed to transform understanding of patients with two or more long-term health conditions admitted to hospital. Five research organisations make up the collaborative; Newcastle University, University of Birmingham, University College London, Manchester Metropolitan University, and University of Dundee.

When patients with multiple long-term health conditions are admitted to hospital, they often experience a complicated and prolonged journey through the hospital system. The first step in improving how we care for these people is to understanding the following:

• What causes people to have multiple conditions?
• How these conditions tend to group together
• How these patients are treated as they move from hospital admission to discharge
• What impact things like lifestyle may have?

With these questions in mind, patients are absolutely central to the success of ADMISSION’s research. But how do we achieve patient involvement during a pandemic when most of the people we want to talk to will be staying at home?

Images above: PPIE Leads, Laura Chapman (top) and Kasia Kurowksa (bottom)

The challenge

To involve people in ADMISSION, we had a number of challenges to overcome. We needed to:

• Involve a range of people with multiple long-term conditions during lockdown when many were staying home and dealing with the varying challenges that COVID-19 has created.
• Include people who live across the country
• Include a diverse range of people including ages and ethnicities

Challenge accepted!

To overcome these challenges, we decided to run three PPI virtual workshops during July where people could come together with the research team to discuss the research questions, design and help us plan patient and public involvement and engagement activities for the research.

Jeremy Taylor, NIHR Director for Public Voice, NIHR Centre for Engagement and Dissemination said in a recent blog:

It should be simple for researchers and public contributors to find each other

We can thankfully report that our experience has been just that. In spite of the challenges it was relatively simple to find one another.

We were delighted to have 22 people interested in joining us for the online workshops, after using all our existing networks to share the invitation across the partner areas. This included our existing patient and public networks at the NIHR BRCs, local patient groups and charities and NIHR partners across the areas such as the NIHR Research Design Service. VOICE (based at Newcastle University) a sector-leading community digital platform of patients and the public across the country, was also an invaluable resource to contact people on a national level. .

Inclusivity in a pandemic?

To reduce the barriers of getting involved in the PPI workshops we:

• Organised them at different times of the day, including after the end of the working day
• Offered assistance and practice Zoom calls before workshops for anyone new to using Zoom
• Provided payment for contributors’ time
• Provided the option to attend one, two or three workshops, rather than making all three mandatory

Of course, there will be people we missed because this activity was digital and not face-to-face. Tackling the digital divide is at the forefront of our minds.  However, we found,  with these enablers, we were able to reach and involve a diverse group of ages and ethnicities in the work. Importantly, by changing the times of the workshops we also involved people who were working, have caring responsibilities, and those managing multiple long-term conditions, which make some times of the day difficult to engage in online meetings.

Managing virtual PPI meetings

Working together across University and NIHR boundaries to deliver the PPI workshops helped us make the most of the time we had with the public contributors including:

• Planning meetings and debriefs to ensure all partners were able to share thoughts and reflections on what people in the workshops told us
• At each workshop, we summarised reflections from the previous workshops and explained how it had influenced the research team’s thinking so the group could see how their input was making a difference to the research
• A short evaluation form was sent to participants at the end of each workshop to ensure we made the workshops as accessible, enjoyable and effective as possible

We had some wonderful feedback from the public contributors. Gillian, a contributor from the West Midlands who took part in all three workshops said:

So enjoyable I didn’t want it to end. I love the fact they listened to feedback and implemented everything from previous meeting… I enjoy working with the ADMISSION team of researchers. The poll was great, as everyone had a say.

So what next?

We were thrilled to have received a great response to the expression of interest for co-applicants from the group, which we hope was a sign they valued the involvement activities of the three PPI workshops. Two public co-applicants have agreed to join the ADMISSION team.  The research team is working with them to finalise the proposed research for the funding application. The contributions of everyone in the PPI workshops will influence the final proposals submitted.

We know that feedback is critical even in these early involvement activities. At the end of the last workshop we ran a poll to find out from the group what the best form of feedback would be. Based on their responses, we plan to host another Zoom meeting in early October to let the group know how their input has made a difference to the final research proposal. We will also create a short summary feedback report for those who prefer to receive an email follow up.

As PPIE Managers, we have relished the opportunity to work across geographical borders and learn from each other in delivering this involvement activity. We have really enjoyed getting to know, and involving a range of fantastic patient representatives who have dedicated time to talking to us whilst dealing with their health conditions and the pandemic. They are a true inspiration.

It has left us wondering what else we could do together to the benefit of the patients and public contributors we work with…