Defining patient and public involvement and engagement (PPIE)
Both researchers and PPIE members described PPIE as being work which ought to be collaborative, where researchers and PPIE members have equal status and opportunity to contribute to the project. PPIE members considered involvement to be an “opportunity to get a wider and diverse audience to engage with things that actually contribute to, hopefully, improvements and development." (P.22 PPIE member), drawing on their lived experience as patients, public, carers and service users. Researchers found PPIE members’ experience was valuable when considering what research to carry out and more specifically, what needed addressing.
“We as researchers, benefit from working collaboratively and openly and transparently with people who use health services. With people who deliver health services. With people who experience health services in different ways. To understand what it’s most appropriate to research and the questions that should be asked about those things” (P.1 Researcher).
Defining rapid research
Both researchers and PPIE members expressed difficulty defining rapid research. For many of the PPIE members, rapid was not a term used specifically to describe PPIE opportunities to them. Most participants (researchers and PPIE members) explained rapid as being where the project needs to start quickly, is carried out in a short timeframe “Just that it needs to be done within much quicker timeframes because the results need to be out there…” (P.26. PPIE member) or for time-sensitive public health emergencies “they’ve mostly been about Covid and that’s why they’ve been rapid” (P.23 PPIE member). In the case of a longer project, rapid was also experienced as being where findings are delivered throughout the project cycle.
“Rapid can also mean sharing findings early. So, it might be a three-year project, but you might be able to share very formative findings within a matter of weeks or certainly months. You know, so there’s different ways that one might think about rapid” (P.1 Researcher).
There are some important distinctions in the perspectives of researchers when comparing the views of those who work in academic settings such as universities with views of workers in the public sector, private consulting firms or charities. For those working in the public, private sector or charities, a rapid approach is considered the normal way of working “I don’t think we ever see it as a thing, as in a particular way of thinking or like your team do. It just happens that some of our work has to be delivered very quickly” (P.15 researcher). These participants also suggest that there wasn’t enough understanding that rapid work is “a disciplined area in and of itself. It’s not just doing things fast.” (P.8 researcher) and for those working in academic settings, rapid can feel less rigorous “because it’s got to be turned around so quickly, it’s not like an academic schedule, so it may not be as in-depth" (P.7 Researcher). However, some felt that what rapid research can deliver is substantial, acknowledging there are some tangible shifts in the mindset of those working in academic settings when thinking about delivering work with speed.
“I actually think what consultancies often do with very limited budgets and very quick turnaround times is very, very impressive. You know, and I think more and more colleagues here, as they experience base work are realising that” (P1. Researcher).
Challenges of integrating PPIE in rapid research
Diversity of PPIE members was the most referenced challenge of integrating PPIE in rapid research. Researchers described PPIE members as being predominantly “retired professionals, probably financially comfortable, educated, etc. and literate with access to devices and Wi-Fi." (P.5 Researcher) and would value a wider range of engagement to gain diverse opinions.
“We need a kind of range of people of different age groups, so younger as well as older, which is a real big problem in not having enough younger people and also, kind of people from different walks of life.” (P.2 Researcher).
Alongside this, one researcher described being turned down by “a group of a particular minority based at the Student Union” (P.5 Researcher) as they received too many requests for involvement work. PPIE members also noted the challenge of diversity with one acknowledging they have “had to ask myself some challenging questions about my own privilege” (P.25 PPIE member) and understanding there was an imbalance in the diversity of people who engage in PPIE, realising “the usual suspects” (P.25 PPIE member) were often involved.
“I remember being in this focus group once and the chair of it, who was actually a public contributor themselves, saying, “The problem with involving people like you is you know too much,” and you get that a lot, it’s like somehow I am stripped of my patient-ness or my patient experience because I’ve got research literate; it hasn’t taken away my patient experiences it’s just made me very good at holding researchers to account in a way that they don’t like.” (P.25 PPIE member).
The nature of rapid research impacts the project setup process and access to PPIE members. For one team, their topics were broad across the healthcare field meaning they felt they would need to recruit new PPIE members for each project. This led to them not carrying out rapid qualitative research with PPIE as time pressures would make PPIE seem tokenistic. While another researcher notes that PPIE members may have other priorities in their life:
“It is their own time and there might be like health issues or other commitments that are sort of have a real impact on their ability to be involved” (P.3 Researcher).
The speed in which rapid projects need to start could also make it difficult to recruit the most appropriate PPIE members in time, build relationships with PPIE members and plan to ensure the PPIE is done meaningfully:
“The challenge in the rapid space of course is time, you know, to ensure that patients and the public can contribute on an equal footing and be comfortable in that forum, they often need some induction, some training, some support, some coaching along the way, and we don’t have those people sitting in the wings, so we’d need that lead-in time to do that well in a rapid evaluation setting” (P.14 Researcher).
From PPIE members’ perspectives, understanding terminology and research purpose, particularly in short timeframes, could be difficult. PPIE members also expressed not being given much time to review documents, particularly protocols or funding applications where there was a tight deadline for submission:
“They say it’s got to be done very quickly, sometimes because the grant application is going in now, or at the end of the week.” (P.16 PPIE member).
Strategies
To address some of these challenges, research teams either built up their own core group of PPIE members or they were “able to capitalise on existing partnerships” (P.13 Researcher) which they had spent time building, to quickly access PPIE members. Other strategies include advertising widely “If you think about it before you do it, then you can target it and make sure you advertise and advertise in such a way that reaches people that you wouldn’t normally reach.” (P.12 researcher) and continuing conversations with networks, while being respectful when potential candidates say no. In addition, participants found that being mindful of potential barriers facilitated recruitment of PPIE members.
“So, you're designing in a way that you're enabling participation, so that you are mindful of issues like digital exclusion, like inequalities, like, you know, access to online platforms, all of those issues that affect participation in evaluation” (P.14 Researcher).
Other strategies mentioned to reduce barriers to participation in rapid projects were to start planning a PPIE approach as soon as possible, so that once the go-ahead is given, teams know who and how they are going to approach as PPIE members.
“if we’re going to go for these proposal or whatever it is we’d like to involve people, so we need to be thinking now about how to do that” (P.3 Researcher).
Researchers placed emphasis on good planning from the outset, especially around setting expectations and boundaries to make sure that PPIE members were aware of the time commitment and timescales. This included being clear on what rapid research meant, for example "the intensity and the frequency of the meetings that we have with PPIE are much quicker and much more frequent" (P2. Researcher). Further to this, some researchers described planning time into the project timeline for feedback; discussing with the PPIE members how the project was going and ensuring space for measuring PPIE impact and dissemination. Researchers also described integrating PPIE into funding applications, setting research questions, assisting with data collection and analysis, and being involved in dissemination strategies. Most acknowledged that PPIE at every stage would be the ideal, but is not always carried out, with some actively evaluating their own PPIE approaches and methodologies to improve involvement.
“We’re currently undertaking a bit of a review of our PPI work and we’re going to ask PPI members to kind of share their thoughts with us about what they think has worked well” (P2. Researcher).
Looking at how teams captured lessons and shared feedback, there was a clear divide between what researchers, and PPIE members experienced. Most researchers expressed capturing lessons either collectively with their team and PPIE members or through self-reflection. In addition, researchers emphasised the importance of giving feedback to PPIE members on how their contribution was used. However, PPIE members reported having limited involvement in capturing lessons following a project; either general project lessons learned or feedback on how their contribution shaped the project. While some did express receiving feedback and finding it helpful, others stated it was not forthcoming, or only provided when they asked PPIE coordinators to follow up with the research teams once the project ended.
“Well, you just feel like, why am I doing this, what contribution, what difference have I made, and it makes me feel quite downhearted, and I don’t think that researchers actually even realise what they’re doing. People take part in research because they want to make a difference, and see that it’s going to make a difference, not only to society but to themselves as well, and with no feedback there’s nothing to support that at all, and a lot of people drop out of research because there’s no feedback.” (P.24 PPIE member).
When asked what tools researchers used to carry out rapid qualitative research with PPIE a few said they did not use any ‘formal tools’ or knew of any, but were building up their own toolkit through experience. However, the majority described using RREAL RAP sheets to analyse data alongside data collection, or using large multidisciplinary teams and multiple, experienced, researchers for collaborative analysis. Many also stated using online methods were quicker for rapid projects and the use of digital methods had increased since the COVID-19 pandemic.
Wider lessons
The overarching advice offered by both groups of participants is to carry out PPIE with meaning and be genuine in the approach so that it is not a tick box exercise. Setting expectations and being clear and transparent with PPIE members around what their involvement will entail and what the timeframes are, was considered key to successful PPIE in rapid qualitative work. In addition, both researchers and PPIE members expressed the importance of treating PPIE members as equal members of the team and providing updates and feedback.
"So authenticity, being genuine. Boundary clear, in your expectations. Clear about timescales, so transparent in your planning and the process" (P.4 Researcher).
"PPIE representatives ought to have some kind of equality of status with the other members of the research team, while at the same time, bringing a kind of unique or certainly a different perspective…" (P.20 PPIE member).
Researchers considered existing PPIE networks to be a facilitator as well as having PPIE members who understand the nature of rapid work "Another facilitator especially has been kind of, because our PPIE members understand that we’re doing rapid evaluation and that we’ve explained it to them quite clearly" (P.2 Researcher). What further helps PPIE members get up to speed with a new rapid project is having clear descriptions of the project using plain language and given in a timely manner so that they can understand the purpose of the research quickly. In addition, PPIE members have found training on patient involvement to be useful, whether for rapid or non-rapid research. They also found benefit in buddying up with experienced PPIE members, public speaking and interview skills training and qualitative and quantitative training.
The benefits of rapid qualitative training were recognised by PPIE members, which involved adopting specific skills and ways of working such as focusing on what matters most and undertaking data collection and analysis in parallel. PPI members expressed the value of this training and how it can be applied to other projects more widely.
“One of my take home messages was the advantage of starting different components of a study concurrently. I could see this was a distinct benefit of rapid qualitative research. It was a valuable training course for me and I've referred back to it during progression of a number of projects” (P.23 PPIE member).
However, there were inconsistencies in PPIE members’ experiences of being offered training, with many not being asked what training needs they had. These participants felt training on the following would be beneficial: qualitative analysis, updated PPIE methods, reviewing applications, how to track changes and understanding systematic reviews. In addition, although training is available from some organisations, PPIE members enthusiasm and commitment were often the reasons why they sought training and continued their PPI work.
“I have always been proactive in seeking training to support my PPI. I believe this is the reason I’ve progressed” (P.23 PPIE member).