29 Mar 2023Public involvement in health and social care research is becoming the standard in health research, and the benefits of this process are more widely recognised. In many cases, public and patient involvement and engagement (PPIE) has become a prerequisite for research funding. But there is some concern among PPIE practitioners that current involvement might be tokenistic – a loophole to jump through to get funding, rather than a truly valuable process and an end in itself. In this blog, we consider the experiences of our Research Advisory Panel (RAP) member, Raj Mehta, whose role in a recent ARC study developed from offering insight to becoming a research partner and co-author.
Embedding patient and public involvement and engagement (PPIE) in research projects is an important priority of our work in the NIHR Applied Research Collaborations (ARCs). PPIE allows us to involve patients and the public in decisions about what we do, and how we interpret and communicate our research findings. This means that research is done in accordance with the ethical principle of ‘nothing about us, without us’.
There is also growing evidence to support the many benefits of PPIE to research. For example, it improves the quality of the results, makes the research more relevant to patients and simplifies the act of applying research to clinical practice. To date, however, roles awarded to laypeople in the PPIE process have been somewhat restricted. These public collaborators are primarily brought in to consult on research ideas, which the researcher then goes off to do themselves, or they might comment on patient resources like adverts or information sheets to ensure these make sense to a broader audience.
In this piece, we look at an example of how laypersons can play a more substantial role in PPIE. Raj Mehta has shown how laypersons can act as partners – bringing their own perspectives to the research project team. His example shows how researchers and lay partners might be able to work together to produce a richer analysis than would have been possible from either acting alone.
Having retired from senior leadership roles in BP several years ago, Raj Mehta joined the ARC North Thames Research Advisory Panel (RAP) in 2015. Raj has been blind for most of his life due to a retinal condition, and has recently been diagnosed with rare chronic conditions including Myasthenia Gravis and chronic inflammatory demyelinating polyneuropathy (CIDP). His lived experience of these conditions and his interest in health care performance motivated him to join the RAP, to give something back to health research projects from their beginnings.
In his eight years with the RAP, Raj has been an active PPIE member working collaboratively with different research teams to make an impactful contribution to research, including on PPIE strategy, policy reviews, research priorities and service evaluations. He took his involvement to the next level on the recent ARC evaluation of the NHS Getting it Right First Time (GIRFT) programme. Having expressed an interest in the project through the RAP, he realised he could bring more to the project, including complementary skills:
“My expertise and professional background, my passion for health care, interest in the topic, and as an NHS service user and tax payer.”
For this reason, Raj asked to work more intensively with the researchers as a partner and find some innovative way of democratising the process. By “democratising the process”, we mean using innovative focus group methodology to:
- Broaden patient and public involvement throughout the research process
- Move from co-design to co-facilitation
Raj says, “I want to ensure that PPIE is not a “tick box” activity. Data collection is not a purely researcher-owned process, but a meaningful opportunity for engagement. For me, being part of this process meant I was a member of the core project team.”
Ultimately, Raj took part in a number of different elements of the project. He co-designed the topic guide, presentation and education materials, and played a central role in the analysis and interpretation of both the qualitative and quantitative data that was collected. He is a named author on the research findings, published in BMJ Open in June 2022, and he also presented a paper at the 2022 Health Network conference.
Raj says that his involvement as a research partner became “a very engaging conversation for all of us. I found I was able to ask questions that researchers may have missed. I was also able to open up the discussion, where researchers may have been led primarily by the topic guide. This generated a sense of us all being equals in the process – the participants, the researchers and myself.”
Raj’s contribution to the study extended beyond the research however, to impact the researchers and the way they viewed PPIE. They came to value Raj for his professional background, in addition to his role as a layperson advisor. He says: “the team that worked together really complemented each other. Our skill sets were complementary. We got on with each other, we respected each other and I think that's the most important bit. They respected my contributions and gave me that acknowledgement and value and that really meant a lot to me.”
“It was really quite illuminating for me, but I felt like it was illuminating for them too. That’s what I value – that the impact was symbiotic.”
ARC North Thames PPIE Lead, William Lammons, builds on Raj’s comments, saying: “Raj’s role on the GIRFT study is a prime example of the impact of PPIE on research. PPIE and its impact are not just about the benefits that involvement has for a study or a project.
‘Impact’ is really about the genuine impacts that the PPIE activities and relationships have on the researchers and the public collaborators. It’s about helping researchers to be more open to sharing the decision making and vision of their studies with peoples from the public, and it’s also about people like Raj feeling empowered, respected, and genuinely involved in a series of activities that can affect the world around them.”
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We thank Raj for his interview contribution to this blog post.
Click here to find out more about the GIRFT evaluation study Raj worked on.
Click here to view the ARC North Thames PPIE strategy.