Print This PostPatient and Public Involvement (PPI) is an umbrella term which encompasses research activities carried out ‘with’ or ‘by’ patients, carers, or members of the public. This is distinguished from research which is considered to be ‘about’ or ‘for’ them. PPI is strongly embedded in clinical research, with patients and the public being involved in various stages of projects led by clinical researchers. However, PPI activities are not typically carried out by laboratory-based researchers, despite growing evidence of how PPI can improve research quality and design. In this blog, I will discuss how to implement PPI as a laboratory scientist.
My first experience of PPI was around 15 years ago, when I was working as a research assistant on a clinical trial in the NHS. During this time, I was trying to build up experience for the clinical psychology doctorate, before then deciding to pursue a PhD. As part of the project, we consulted patients on study design and the research materials we were using. When I later returned to university for my laboratory-based PhD, I drew a distinction between these two types of research whereby PPI was applicable for one type (clinical research) but not the other (laboratory research). Afterall, no one I was working with was doing it, and because laboratory-based researchers have little or no contact with the people whose lives are directly affected by the conditions we were researching, it was assumed to not be needed. It was never questioned.
As I’ve progressed through my career, there has been a gradual shift in identifying ways for PPI to be implemented in laboratory research, and many funders in the UK now require this as a condition of research funding. However, PPI activities remain relatively unfamiliar to laboratory researchers, with many scientists keen to find ways of implementing PPI but with no idea of where to start, with some even confusing involvement with engagement. So before exploring ways to carry out PPI, it’s important to first be clear on what PPI is, and what it isn’t.
PPI is defined by the National Institute for Health Research (NIHR) as being research activities carried out ‘with’ or ‘by’ patients and the public. For example, this may include involvement in determining research area priorities, providing advice on study materials, or helping with aspects of study design. PPI does not include anything which involves gathering data from participants as a research output. It’s important to distinguish PPI from engagement activities as they can often be mistaken as PPI by researchers who are unfamiliar with it. Patient and public engagement relates to activities which involve disseminating research to patients and the public, for example, through talks or open events, as a means of raising awareness and sharing research findings. Both involvement and engagement activities are encompassed in the term Patient and Public Involvement and Engagement (PPIE). Engagement is typically carried out by all researchers to varying degrees, but involvement has historically only been something which clinical-based researchers have carried out to ensure clinical research is focussed on patient priorities and what will be of benefit to them. In recent years there has been a push towards encouraging and supporting laboratory researchers in carrying out PPI activities.
In research, PPI means involving people in all aspects of the research process as partners rather than as research participants. This is also referred to as ‘Patient and Public Involvement’.
So if you’re a laboratory-based researcher with no PPI experience, where do you begin and how do you start planning? Firstly, some charities and universities have training sessions and resources which provide information on what PPI is. An online practical guide for PPI in lab-based research has been jointly developed by Parkinson’s UK, Alzheimer’s Society, and the NIHR, which I’ve found particularly useful. Understanding the variety of different activities under the PPI umbrella can help you to determine which would be most appropriate for the type of research you do. Ideally, PPI would be integrated across a whole project, but this may not always be possible. You may not be able to engage in the same way as clinical researchers, as you may not be recruiting people for your research, for example. It’s important to be flexible and realistic about what you can do, rather than trying to replicate PPI typically done in clinical-based research.
Engaging with people either through charities or your own institution can help you determine what you want to achieve, who you need to involve, and how and when to go about involving them. PPI experts can also advise on whether they already have connections with existing PPI or patient support groups who you might be able to approach about potential involvement in your work. Speaking with clinical colleagues can also be helpful and was how I initially recruited people with dementia and their family members for my own PPI project. Having these discussions and determining what you want to achieve is the first step and should be carried out as early as possible.
Now that you’ve decided you want to carry out PPI and you’ve sought out advice on what you want to achieve, the next thing to consider is any associated costs which may arise. These can include costs for hiring out a room and providing refreshments for in-person meetings, covering travel expenses, and remunerating PPI members for their time. If you factor in these costs as part of a larger research grant application, it will demonstrate to funders that you have thought carefully about what you’ll need, and how you’ll ensure members are fully compensated for their contribution. For PPI carried out prior to the grant application stage, for example to determine what research area to focus on and the study design, some funders and universities have money available to cover these costs, which can be applied for.
The next things to consider in your PPI planning, once you have a means of contacting people who might be suitable, is to consider an appropriate number for the type of meetings and discussions you plan to facilitate. Smaller numbers (i.e., less than 10) will allow for more in-depth discussions and more personalised interactions. However, smaller groups risk lacking representation. Larger groups, on the other hand, can provide greater representation, but can make group discussions more challenging. If you intend on holding in-person meetings, consider involving people who live near by to where it will be held, but acknowledge that again this can limit representation. Holding meetings online can be a great solution as it can allow people from a larger geographical area to take part, however, this could risk digital exclusion for those either without the means or knowledge to access online meetings.
In terms of the length of how long meetings should be, usually no more than two hours would be recommended, and consider including a lab tour as this gives PPI members an insight into your area of research which they wouldn’t typically see, and they are always well-received. It is important to ensure refreshments are provided, and accessibility is considered.
Finally, it’s important to consider and address any potential barriers to inclusion. I’ve already mentioned some, which include lack of digital access and the location and accessibility of in-person meetings. Others include cultural barriers around taking part in research, lack of trust in researchers, financial impact (e.g., needing to take time off work to contribute), and health status (e.g., learning and/or physical disability, mental health condition, and cognitive impairment). Potential barriers that may exclude underserved groups from taking part need to be acknowledged, and ways to overcome these barriers need to considered. A resource I’ve found useful is the NIHR-INCLUDE guidance.
Laboratory researchers can carry out PPI at any stage of a research project, whether it’s asking members to advise on lay summaries and study materials, forming a steering group embedded throughout the project, or as joint co-applicants from the grant application stage working to determine all aspects of the project. Although it’s important to strive for representation, I’m reminded of something a PPI member said during a workshop I attended: ‘One person’s experience of living with dementia, is one person’s experience of living with dementia’. Representation in PPI is important, but we have to keep in mind that individuals within particular demographic groups are not a monolith and can have vastly different experiences and opinions. PPI members therefore represent the general views of patients and the public and may not always reflect individual experiences.
Dr Kamar Ameen-Ali
Author
Dr Kamar Ameen-Ali is a Lecturer in Biomedical Science at Teesside University & Affiliate Researcher at Glasgow University. In addition to teaching, Kamar is exploring how neuroinflammation following traumatic brain injury contributes to the progression of neurodegenerative diseases that lead to dementia. Having first pursued a career as an NHS Psychologist, Kamar went back to University in Durham to look at rodent behavioural tasks to completed her PhD, and then worked as a regional Programme Manager for NC3Rs.
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