Guest blog

Guest Blog – Doing PPI on my PhD project

PPI with people with language led dementia: the barriers & the facilitators

Patient Public Involvement (PPI) is also known as ‘involvement of experts by experience’, ‘user involvement’, ‘service user involvement’ or ‘lay involvement’. My preferred term would be the involvement of experts by experience. And having spoken to a few people (who have acted in this capacity on various projects and committees I have been involved in) there has been a preference for this term. However PPI seems to have taken off for now.

INVOLVE is an organisation funded by the UK government to support active patient and public involvement in the NHS, public health and social care research. They define PPI as: work (research or services) designed and delivered ‘by’ and ‘with’ rather than ‘for’ and ‘to’ service users. This means that research or research is conceived, designed and delivered with service users as members of the ‘team’. INVOLVE emphasises that including service users from the planning stages through to the execution stages of a project is desirable, rather than simply consulting on a one-off basis to check for approval. Although any kind of consultation is useful, this is exactly what it is – consultation rather than co-development.

PPI is a hot topic in research at the moment, and an entire special edition of Dementia has focused on publishing articles on this theme. Yet with my clinical hat on, the idea that PPI should be a novel concept slightly surprises me. As a speech and language therapist I have always worked with adults with communication difficulties and have always collaborated with patients to decide on what we should work on. I really wouldn’t know what the most important communication situation is for that person, unless they tell me. Thus working with people to plan, deliver and report research seems fairly logical to me.

It can however be difficult to do PPI work well in a project. Some of the barriers listed in the scoping review by Bethell et al (2018) in the special edition of Dementia have been identified as resources (time and money), being able to share decision making (on the part of the researchers), involving representative groups, involving both people with dementia and their care partners, an understanding on the part of the people participating of what this should involve and when and demonstrating the impact of PPI. Some of the barriers are easier to overcome than others.

On my PhD project I have endeavoured to include PPI as a key and valued aspect of the project. Here is a little break down of how this is going:

The first thing I would say is that resources were never a concern. The NIHR fellowship |I successfully applied for included funding for PPI on the list of finance items to consider when putting together the application form. I was therefore able to request funds for all the PPI work I have done, using the INVOLVE website calculators, I including costs for refreshments, travel reimbursements and an honorarium for each person, each time them attended the Steering Group meetings for the project. This in turn meant I planned the number of Steering Group meetings I anticipated having throughout the project well in advance, incorporating it as a key element of the project. Additionally I included funding for expert training for me from a very experienced SLT who has worked in this area with people with stroke related aphasia for many years. There are few resources to guide a researcher on how to do PPI work, and even fewer on how to do this with people with communication difficulties. So this training seemed invaluable.

Shared decision making is a tricky concept. There are many aspects of my PhD that I do not have complete control over anyway. I am a student researcher working with my PhD supervisors and mentors at a large University. One of the suggestions made by the expert SLT providing me with the training and mentorship around this subject was that I should always make it clear what aspects of the project were not up for discussion and which we would work together on. Thinking of it this way made so much more sense to me. And as I have worked with my PPI group I have also seen that the steering group hold much more wisdom than the individual. We are co-producing most of the materials for the intervention that I have been piloting (and the materials that will ultimately sit alongside the intervention on the UCL extend website once we have launched it). I wish we could have done even more of this work together, I have found there is never enough time to do all the co-production working I would like to do within the steering group meetings. So perhaps I don’t have enough resources/time after all!

Over the course of the project the members of my steering group have changed somewhat. This has happened organically, as people were or were not able to remain involved. I work with people with language led dementia (primary progressive aphasia; PPA). This is a progressive condition meaning that people have deteriorated over the course of the project. As a group we agreed that, when one of the couples involved decided it was too much to continue attending, we would recruit another couple to take their place. We also wanted to recruit people who were younger, as well as older. PPA is generally considered a younger onset dementia and we didn’t originally have anyone who was in that younger age bracket. We now have a couple involved where the partner continues to work full time, and they have two teenage children. This lends a different and useful angle to the project.

People with communication difficulties are often supported best in conversation by those who know them best; their care partners (or communication partners as I prefer to call them). In view of this I purposefully decided to include the partners of people with PPA in the steering group. We have a set of group rules that we drafted at the beginning (and we occasionally re-visit) and members of the group regularly make suggestions on how to improve the communication environment. Only last week one of our group members flagged that we needed to slow certain conversations down. We also use non-verbal means to share ideas such as communication cards to ask questions (see photo below), non-verbal voting methods (see photo below), drawing and gesture.

All this week the Alzheimer’s Society and Dementia Researcher is sharing information on Patient and Public Involvement using #PPIImpact – visit our website every day this week to see blogs from James Pickett, new video and report sharing the impact of PPI and a podcast on Thursday with Anna-Louise Smith, Dr Kirsten Moore and Jane Ward.  You can also take a look at the Special Issue dementia journal: Patient and Public Involvement in Dementia Research: Moving from Proving to Improving


Anna Volkmer is a Speech and Language Therapist and NIHR Doctoral Research Fellow working in Language and Cognition, Department of Psychology and Language Sciences, University College London. Anna is researching Speech and language therapy interventions in language led dementia.

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