Imagine being a public involvement lead. It is 5pm on a Monday and an email lands in your inbox from a researcher you may be familiar with, or whom someone else has directed to you. They are putting together a bid for a big study and want a patient and public involvement (PPI) group to look over their bid, especially the plain English summary and maybe the recruitment and dissemination plans as well.
This is just a one off but those interested could also join the study in an advisory group. Ideally the group members’ lived experience should reflect the populations targeted by the study. The email may mention paying the group – or it may not, since there often is no budget for bid prep work. Oh, and the bid needs to be in by Friday.
What would you do in such a scenario? You may decline: PPI needs time and resource to do properly and public contributors are not obligated to jump to researchers’ deadlines and your capacity is also limited. On the other hand, you might think: this is an important researcher, doing important work, if I say no now, I risk burning that bridge and losing them. It is better to try to work something out, maybe meet them halfway, so that next time they have learned something and are more inclined to involve me, or someone in a similar role, earlier, to build PPI in from the start.
Or you might worry that you cannot simply refuse – after all, you are the PPI lead, hired to find a way around such problems. And what if you refuse and then the study proceeds without PPI? This study could be a much-needed opportunity to do good work in an area that rarely gets attention….
If you work in PPI this is a familiar dilemma. While PPI is expected in most if not all health and care research in the UK and more widely, much of the labour which underpins PPI remains invisible. This leads to what, in our study of the PPI workforce, we have called ‘conjuring PPI’: expectations for last minute or just-in-time involvement which allows researchers to ‘tick the box’ but also indicates how much of the work of involvement is unseen, unacknowledged and under-resourced.
It also means that opportunities for meaningful, effective and sustainable PPI are missed, especially when seeking to involve those who are marginalised and under-served.
Having worked as both PPI leads and researchers (and many people in health and care research are indeed both), we set up this study to understand how this invisible labour is produced, and how the ‘PPI workforce’ navigate their task to embed PPI in research. We chose to focus on research funded by the National Institute for Health and Care Research (NIHR) because the NIHR has been central to developing and embedding PPI in UK health and care research and have sought to normalise the ‘doing’ of PPI into yet another thing that ‘counts’ and can be counted: the NIHR has set up reporting frameworks and piloted national standards; there are payment guidelines, training programmes, reporting frameworks and national standards; and in April 2024 NIHR unveiled five commitments to PPI. As a key part of this infrastructure, a dedicated workforce of PPI leads, co-ordinators, managers, practitioners and researchers support researchers in doing this work.
Ours is not the first study to draw attention to the labour underpinning PPI: other researchers have cautioned how developing better tools for involvement can also inadvertently increase the workload for those tasked with embedding these tools; and, more recently, our colleagues developed a competencies framework to parse out the skills and needs of these workers. Our focus in this blog is to draw attention to how PPI work becomes invisible: how efforts to link members of the public to an institution may create invisible work and how turning involvement into a project to be ‘delivered’ may produce the wrong kind of visibility.
Understanding these challenges is essential, especially at a time when research institutions are extending equitable involvement and prioritising the engagement of minoritised and silenced voices. The NIHR commits to ‘embed[ing] research inclusion’ in public partnerships, echoing the current commitment of the Department of Health & Social Care (DHSC) to “a diverse and inclusive research environment founded on close and equitable partnerships with communities and groups”
Feminist sociologists have used the term ‘invisible work’ to refer to care work, housework and other forms of undervalued labour which is normatively feminised, and considered low-skilled. In PPI too, there is an assumption that much of the work merely requires ‘soft skills’ – which, unlike ‘hard skills’, are not a result of rigorous professional training, but instead, it is assumed, come naturally.
What is overlooked in this implicit devaluing of ‘soft skills’ is the extent to which the PPI workforce have to constantly navigate complex institutional processes and systems to which public contributors are outsiders.
They are not usually included in payrolls, managed by HR, fully embedded in the institutional habits marked by work calendars and Zoom meetings. They are not engaged with as workers or study participants, so there is no contract or protocol binding them to the institution and regulating their activities and transactions with researchers. They are valued as outsiders to the institution -- linking it to something called ‘a community’ -- yet it is the task of the PPI workforce to ensure they are treated equally to insiders.
In navigating institutional systems, PPI workers often discover that not only are these systems not built for public contributors’ use, but in fact the opposite can be the case: they are built to exclude them. So ‘building relationships’ actually means finding ways to carve up new spaces in these systems, by jerry-rigging the missing connections. PPI workers must not only ensure that physical spaces, as well as digital ones, are accessible and inclusive, but also that institutional processes can be bent to new requirements: that payment forms can be repurposed to deliver one off payments, that long delays can be avoided, meetings can sidestep the logic of agenda bound time-keeping, that institutional messages and documents can be re-interpreted, scaffolded, and personalised to serve new needs and new readers.
All this work is provisional and temporary: because it goes against institutional templates rather than following them, it must continually be redone.
The NIHR has attempted to make PPI labour visible and lay out its components: since 2019, they have required a PPI lead role in all applications for funding. A dedicated NIHR webpage lists an extensive and complex roster of responsibilities for that role. This requirement suggests that involvement activities have now been fully assimilated to the performance-based obligations governing research delivery systems.
However, our research has indicated that this requirement often produces the wrong kind of visibility. For example, in grant applications, the term ‘lead’ usually refers to a senior role who oversees and is responsible for a specific part of the proposal. However, PPI lead roles rarely involve such seniority and, unlike research leads, they do not have the authority to shape research and even their involvement designs can be ‘adjusted’ for them. The term lead is, in other words, mis-leading. Likewise, the way in which grants are costed usually results in a PPI lead being allocated 5% of a full-time role, that is, less than 2 hours work per week. This allocation, to put it very mildly, is woefully inadequate for even the most tokenistic involvement work.
Reporting systems that include a PPI section may create further challenges. In order to increase the likelihood of securing more grants, research teams need to show that PPI has been ‘delivered’, that targets have been reached.
The pressure is always on to tell a good story and to report that PPI has always already been delivered. “No one is going to report the bad stuff” as one participant told us. This focus on reporting the good stuff in turn can make it even more difficult for PPI workers to push back against expectations to ‘conjure PPI’. As one of our participants argued, in some cases, pushing back could be perceived as overstepping one’s role because:
I am not there to really point out any of the issues. I am there just to get on with it.
Our research points to the limitations of turning PPI into one more performance obligation, one more research deliverable. In doing so, we may lose sight of the original purpose of public involvement: to intervene into the priorities and ‘deliverables’ which shape research environments.
At a moment at which the NIHR is preparing to release its next round of funding calls, we urge the NIHR, and the research community as a whole, to remember that “work[ing] differently..taking research closer to people in the communities where they live and work and building relationships of trust over time” requires more than appropriate resources.
It requires all of us to unpick and reshape the routines and conventions that have come to shape project-based work in research institutions – in other words, to combat the compulsion to “just get on with it."
Dr Stan Papoulias is a research fellow at King’s College London and patient and public involvement research theme lead, ARC South London
Dr Louca-Mai Brady is a reader in youth involvement and health at the Centre for Public Health and Community Care, University of Hertfordshire