Patient and public involvement in health services: Paying more than lip service

Abstract

Patient involvement in health services dates back to before the inception of the National Health Service (NHS) in the UK. The UK government formally recognized the relevance of public involvement in the NHS Research and Development Strategy in 1991,¹ and for the last three decades patient and public involvement (PPI) has been formally integrated into healthcare and research. But what does that actually mean for our patients and carers, and are we doing enough?

PPI is now established in the field of child neurology and is recognized as being key to delivering high quality patient care and research. We are moving beyond the ‘tokenism’ approach in evaluation of PPI, but how well do we measure involvement and how do we mitigate against the potential negative impacts of PPI? Measuring numbers of people involved, workshops/meetings, etc. tends to be the standard way in which involvement is demonstrated but there are often more powerful messages from qualitative feedback. Comments such as ‘We were in the room (box ticked), but we did not feel listened to,’ suggests that we have not always got it right yet.

In a commentary by Russell et al.² on the impact of public involvement in health research, the authors highlighted potential negative impacts for those involved such as frustration at the limited opportunities to influence the direction of the research, time, and financial burden. They also identified negative impact on the researchers themselves, including the stress and tensions that can arise in negotiating divergent interests. We cannot shy away from discussions around controversial issues and healthy disagreement, and a culture of respect is crucial.

For meaningful PPI, the involvement needs to start at the conception of a project. This enables views to be embedded from the beginning and a partnership fostered. The SCN1A Horizons study is an example of a research project which involved PPI from the beginning in a partnership with Dravet Syndrome UK and Dravet Syndrome Foundation in conceiving the project, writing the protocol, and many other aspects of the study including responsibility for governance on the Project Management Group. The study was launched at the Dravet Syndrome UK conference and the study is highlighted through their website (https://www.dravet.org.uk).

As child neurologists we see PPI in many aspects of our work. Training, education, research and service developments are all areas where engagement with PPI is active. In 2023 the British Paediatric Neurology Association (BPNA) looked at PPI across the activities of the organization and it is clear that we could be doing more. For example, under education, our level of engagement on the ‘Ladder of Involvement’³ was 1 to 2 (i.e. emerging involvement) on a scale of up to 5 (partnership). In the recent rewrite of Paediatric Epilepsy Training (PET) courses, PPI was more developed including feedback on the course revision which enhanced the course material. In particular, this led to the inclusion of patient stories, photographs, and videos. One video is from a low- and middle-income country where PPI is less well developed and highlights some of the challenges faced by patients in this healthcare setting, from which everyone can learn. We still have a long way to go to ensure we have full representation of our patient population (e.g. sex, ethnicity, social class, patients with intellectual disability, children, and young people). We need to empower, support, and facilitate public involvement for everyone.

From 8th to 10th January 2025, BPNA members and colleagues will meet in Oxford or join in virtually from around the world. PPI is a topic of one of the personal practice sessions and we will have the opportunity to network with many of the amazing charities who work with our families and hear the patient voice through scientific presentations. We need to continue the dialogue as there is definitely more we should be doing, and in partnership.