As one of the four lay representatives for the Embedded Research project, I want to share some thoughts about some of the Patient and Public Involvement (PPI) issues that are coming up in the initial part of the project.

We had a pretty good idea that Patient and Public Involvement (PPI) would not feature very much in the lives of embedded researchers and this proved to be the case from  the literature researches and the preliminary data gathering. 

From the small amount of data we have collected so far, and without wanting to generalise or anticipate the more detailed work that will come as the project progresses, three scenarios emerged from the initial work:

  • some had indeed involved patients in the embedded project
  • others had taken a more standard approach to PPI by engaging lay representation in specific projects
  • others hadn’t involved any PPI.

So, what is your view on whether PPI works within embedded research? Or why haven’t you included it in your work? This is something we’re very keen to get feedback on.
From our initial data we can make two observations: First, that it is useful to try and distinguish between PPI in the embedded initiative and PPI in a specific project within the wider embedded initiative.
This can be done by considering whether there has been any involvement in determining things like the intended knowledge outcomes, the focus of the initiative, structural features of the initiative, the activities undertaken by the embedded researcher and so on.
The raises two questions about PPI in the embedded initiative: are citizens a genuine partner in the initiative? And, does the embedded researcher have a close relationship with those citizens in their work at large?

Why have some embedded research initiatives not included any patient or public involvement?

With PPI as part of specific projects within the embedded initiative, the model would look more like standard PPI. Here, patients and public members are involved in advising on research question/design, data collection, data analysis and dissemination. Involvement here would be focused on a specific piece of work that the embedded researcher is undertaking as part of their role, rather than on their role per se.
The second observation is that the approach taken is likely to be a product of  the host organisation’s attitude towards, understanding of and infrastructure for involvement, and the intention of the initiative itself (i.e. whether the initiative is intended to close the gap between research and practice more broadly or to contribute to a specific ‘piece’ of knowledge/learning for the host organisation).
So we can think about the PPI issue in terms of PPI in the embedded initiative, as opposed to PPI in a project, by looking at how an embedded researcher can involve patients/public/citizens in the design and operationalisation etc. of the embedded researcher initiative itself.
To help with this, it will be useful to think about understanding PPI by looking at three characteristics of embedded PPI in terms of intent, structure, and process. And maybe picking up on the current National Institute of Health Research (NIHR) thinking, we could include outcome/impact.
The other key observation is why have some embedded initiatives not involved any PPI? We can only speculate about the reasons, but the answer to this question is just as important as finding out about PPI when it has been included.
So, as I indicated at the start of this blog, it is early days in the life of the Embedded Project and there is a lot more data to be collected and analysed. However, I am hoping that the embedded researcher network that this project is building will be able to provide some useful feedback on all aspects of the project.
But for myself and my three lay colleagues getting any views on how PPI works, or not, or why you have not included PPI in your initiative, will add to the success of the project.

Richard Parnell is a social scientist and member of the Embedded Research project team.


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