Reflections on Patient Public Involvement and Engagement during the Covid-19 pandemic: so much more than running digital patient panels
During the year April 2020 - March 2021, our research teams, through necessity, wrestled with the question of how to do Patient Public Involvement and Engagement (PPIE) effectively during a pandemic, where digital working largely replaced face-to-face interactions overnight. In this blog, we take stock of what our ARC managed to do and did not manage to do – and the relevance of this learning for our PPIE into the future. In a pattern that we think mirrors what happened in the wider PPIE community we experienced the following sequence of events:
i) Shock, uncertainty and panic:
Each of our research teams had established processes and plans for PPIE that comprised mainly of face-to-face meetings or workshops. For example, our mental health theme was planning to establish a ‘Lived Experience Advisory Panel’ and a James Lind Alliance Priority Setting Partnership. Other themes relied on advisory panels that met regularly in person. All of these activities were paused as researchers took an in-breath and saw their planned timescales and agreed objectives slipping through their fingers.
ii) Understanding and embracing digital formats:
We worked with a regional partnership (PPIE Voices) to quickly pull together best practice guidance on utilising technology to keep PPIE activities alive. This covered topics such as ‘facilitating online meetings’ and ‘online platforms and their relative merits’. It was used to help our researchers embrace digital formats for PPIE and many of them did so very effectively. Panels were run online, and priority setting activities were reconceived through the input of an online steering group who helped develop a survey for wider circulation. There was a sigh of relief as we all realised that, whilst such approaches were not perfect, PPIE did not have to stop.
iii) Seeking ways to ‘keep in touch’ and maintain existing relationships:
Moving online did not address all our needs. Because of the gravity of the situation at the start of the pandemic, there was uncertainty about how many of our public contributors were faring – many fell into particularly vulnerable groups so were shielding, some were suddenly home-schooling, and some had become ill themselves. Indeed most people were facing significant challenges. Acknowledging this meant that our first step, even before launching online forums, was to ‘keep in touch’ with existing contributors. For those on our own groups, phonecalls were used to check-in to see if everyone was okay, and only then to ask if online forums were something they could attend: did they feel confident? did they need support? if they could not attend, were there other ways we could keep them involved such as via follow-up calls or emails? With a travellers community, direct engagement was suspended but researchers kept in touch with the key contacts, mainly via WhatsApp.
iv) Becoming conscious of digital exclusion
We soon became aware that some people were excluded from the digital forms of involvement that had become our mainstay. For example, online arrangements did not suit one research team’s panel of older people who contribute to research on frailty and ageing. Whilst they were still asked to input individually via telephone and email, their group forum for more general discussion was halted. Our mental health researchers also recognised the limits of online involvement for many of the people they wanted to involve. They found some ways around the problem i.e. recruiting people such as existing Patient Research Champions who were used to trying these new approaches (with support). Reaching out using digital methods to ‘brand new’ contributors was deemed much more difficult.
I scouted the online world and came across an open letter by Edel Murphy and team who presented what they called ‘PPI essentials in a Pandemic’. Using their terminology of PPI rather than PPIE, they proposed the following things as necessary to keep this agenda alive in these times: invest in PPI; continue to build PPI relationships; use creative approaches; be inclusive; be additionally sensitive. They explain each of these in some detail. With this list in mind, we can reflect on how we as an ARC have fared.
In some ways we did well:
we continued to invest in PPI by ensuring support was available to our researchers as they grappled with the new context, recognising that it was perhaps even more important than ever to include the perspectives of people who may be affected by the pandemic
we continued to build PPI relationships with our existing public contributors, in some cases strengthening these amidst a sense of mutual care and understanding. This linked to our commitment to be additionally sensitive to the challenges they faced and respectful of these when asking them to contribute.
In two of these essential areas, we fared less well:
First, this was in our use of creative approaches. During the pandemic we have mainly used virtual forums and/or surveys. Elsewhere we know alternatives have been tried and we too need to branch out with or without a pandemic e.g. David Owens discusses Hyperlocal engagement during lockdown – innovative ways to engage safely with small groups of people in their own environments, mainly outdoors and socially distanced, or perhaps hybrids where analogue interactions are shared more widely online.
Second, now the panic is over and our online forums keep us ticking over, we have chance to step back and commit to being more inclusive.
In these challenging times, we have defaulted to involving who we already knew. We now need to commit to revisiting our research plans and consider who we really need to reach out to as opposed to who it is easiest to reach.
This blog was written by Claire Marsh on behalf of the YH-ARC PPIE Leadership & Support Group (PLSG) and the research themes we support. The PLSG is made up of 2 public contributors and 2 co-leads and supports research teams to achieve quality PPIE, through training, mentoring, advice and guidance.
3 August 2021