Patient and Public Involvement and Engagement

REEM researchers’ individual journeys towards this project mainly focus on academic factors and histories, but is important for patient and service user representatives to also share their perspectives. Methodological research can be less accessible to those outside academia, so we have collated here some key viewpoints from the PPIE team collaborating on this project.

For some, the idea of combining realist and economic evaluation is self-explanatory, underpinning the importance of REEM.

Vivienne Hibberd

PPIE co-lead

My ‘Road to REEM’ probably started a couple of years ago, when I was involved with a health research project from a Public Involvement perspective. I was quite shocked to realise that there was no meaningful evaluation – cost-based or otherwise – of this service, and wondered if this lack of evaluation applied to other health and social care services; what that might mean in terms of determining good outcomes for service users; and how effectively our public money is used. 

More recently, as a carer, I have been tangled up in the various health and social care services which have been provided to a relative (a horror story!). Again, I’ve been taken aback at the apparent lack of co-ordination across and evaluation of these services, to determine whether or not they provide the best outcomes possible for patients/service users. It has been quite scary to see just how little power some patients/service users have to influence even the most basic services they receive.

I’m hoping my lived experience might be of some use in informing the PPIE aspect of the REEM project.

Many interventions are publicly funded, so the importance of balancing costs and resources, in addition to understanding patient or service user experiences, is also well-recognised.

Margaret Ogden

PPIE and steering group representative

I have been involved in realist evaluation previously as a PPI member, but REEM is my first project with such a heavy emphasis on economics. The philosophical underpinnings were always going to be a huge challenge. I have used the word ‘abstract’ often during our discussions at our inaugural and subsequent meetings.

My takeaway message has been that mechanisms are what gives realist evaluation its unique character. The interpretation and action upon interventions are at the core of REEM. We have learnt about programme theory – with examples to aid understanding – and became aware of the importance of contexts, mechanisms and outcomes. I am confident realist evaluation will become more ‘real’ to us as individual projects are rolled out during the life-course of REEM.

One of our primary aims is to make the language of REEM accessible for a wide range of users – not just evaluators, but also commissioners, clinicians, health and care practitioners, and people in other sectors.

Felicity Shenton

PPIE co-lead

I am new to both realist evaluation and economic evaluation and am finding some of the language inaccessible – although a very helpful training session has been delivered by the REEM team. I was pleasantly surprised when so many public contributors expressed an interest in this study as the language and conceptual frameworks could be seen as impenetrable. I feel more public contributors could be encouraged to be involved once they can see what a difference they can make and what a valuable contribution they provide.

My interest in REEM is, therefore, to ensure that the voice of service users, people with lived experience, is heard in this study. And that ‘benefits’ or ‘outcomes’ are explored from a number of perspectives. My continual question is – what difference does this make to the end user i.e. the patient, service user etc.? How is their perspective being heard or represented?

Realist evaluation may have more philosophical baggage than economic evaluation and some REEM concepts may be considered somewhat abstract. Nevertheless, gaining an understanding of such methodological ideas is the best way to understand the implications of REEM, and the value added by the PPIE team.

Victoria Bartle

PPIE group member

I believe that wherever there is a decision to be made about what to include or exclude in research then PPIE can contribute. I haven’t been involved in health economics PPIE before, but questions around which data to include in the financial assessments, and decisions on what services people can access are areas where researchers could work with PPIE contributors, to ensure that results are realistic, and representative of the actual lived experience being studied.

This is what appealed to me about the REEM study. It was something different that I could learn about and take that knowledge forward to other projects. In my mind, combining realist and economic evaluations is an obvious route to ensuring effective new health and social care treatments and interventions that also provide value for money. This may not be the “traditional” method of involving the public in research [but] if we can involve people with relevant lived experience in all aspects of research, even the apparently complex, then we will identify and create outcomes that are truly beneficial to the public.