The importance of Patient and Public Involvement (PPI) in healthcare research and transformation

October 19, 2021


Post Title

Covid-19 has led to significant changes in how mental health services in south London have been delivered. There has been a rapid shift from face-to-face to remote telephone and video consultations. Although remote consultations bring about many benefits for those using them, they can also be challenging.

As a key part of the Remote Consultations in Mental Health project, the Health Innovation Network (HIN) collaborated with King’s Improvement Science (KIS) at King’s College London who facilitated the set-up of our experts by experience team. This team have been part of the project’s Patient and Public Involvement (PPI) group to better understand the benefits and challenges of remote consultations in mental health settings.

Involving people with lived experience, including service users and carers,  through PPI is a vital part of healthcare research and transformation. For our Remote Consultations in Mental Health project, our PPI group is comprised of people with lived experience of physical and mental health conditions, as well as a variety of treatment experiences and ethnic and cultural backgrounds.

The Health Innovation Network would like to thank our PPI group collaborators – Mel, Lana, Paul, Sarah and the patient and public involvement co-ordinator from KIS Len, who also has lived experience of using mental health services - for sharing their reflections on the project with us through the blog that follows:

Why we got involved

Many of us in the project group have lived experience of how dramatically the changes brought about by Covid-19 have affected the provision of mental health services. For all of us, regardless of whether we come from a place of being a current service user or have been one in the past, we wanted to ensure that mental health services were fit for purpose given the scale of change that has happened very quickly.

We all have specific things that we want to bring to the project. For example, we have members of the group who have been inpatients during the pandemic and haven't had access to the internet – making them reliant on different methods of communication, and significantly changing their therapeutic relationships.

It's so important to have people talking about their own experiences of health care during these turbulent times. It can be easy to overlook people who are "digitally excluded" if they are just numbers on a page, but we think being able to talk about our experiences first-hand really helps clinicians understand the day-to-day complexities of living with a mental health condition.

We were determined to make sure that PPI was not about going through the motions. PPI is a term you hear a lot and isn’t always done right. The group has been involved in project meetings and work since September 2020 and, given the challenging situations we have worked through over the last 18 months, we are grateful to have been able to input and provide expertise to the project team. Although we strive for coproduction, what we achieved in this project was good PPI throughout the project timeline.

What we did

Working as part of the PPI group has provided a great opportunity for many of us to contribute experiences in order to better support the improvement of mental health services. We had the chance to get involved in a wide range of different activities with numerous goals.

Throughout the work, we have seen the power of bringing people with lived experience and health professionals together. Whilst we as the PPI group have been empowered to help shape the work of organisations, such as the HIN, we also hope that we empower the health professionals that we work with by providing them with a deeper level of understanding of the human side living with a mental health condition – not just from our own personal experiences, but reflecting the wider shared experiences within our communities.

One of the key elements we have worked on has been a series of infographics that are designed to be clear summaries of the latest research in this area which can be understood by everyone from public to clinicians and researchers. As well as deciding the content, we also shaped the visual look of the infographics and the language used, using our own experiences to make the final products inclusive and accessible for the widest possible audience. PPI can often seem like an abstract concept, but we were lucky enough to have something tangible that the group could see evolve in real time and have ownership over. The infographics provided us an opportunity to tap into our creative side and condense a lot of information in a succinct way, helping us to connect the wider service user population back to the work of the project.

We also felt we had a key part to play in highlighting the challenges with remote consultations in mental health settings, particularly around digital exclusion. For example, one important point that we discussed during the work was that there are easily overlooked groups, such as service users in the criminal justice system. This was interesting as it looks like many pieces of research about remote consultations weren’t necessarily including insights or experiences from such groups.

More symbolically, we think it is reassuring for the wider service user population that we are visibly involved in the work. Change can bring anxiety for many people and we hope that knowing the patient and service user voice is represented in these changes will let people know that it isn’t just clinicians or commissioners who are making decisions that will affect their treatments. 


Pictured above: An infographic co-created with the PPI group.

Looking to the future

One of the big takeaways from all this work has been that remote consultations offer a useful choice for lots of people in how they access mental health services. For many people, having appointments remotely is beneficial– saving time and money and being more convenient.

We think the key point that we want to make sure is heard is that technology giving us more options is a positive thing, but letting an enthusiasm for technology run unchecked can be absolutely disastrous. We cannot let new technology cause harm through worsening digital exclusion, and we have to keep listening to service users when they say they want choices in how they access care – not just going with the latest and greatest technological solution.

More generally, we hope that this kind of involvement of service users, carers and public members within research continues and is strengthened in the future. We feel that the project has benefitted from PPI and we have in turn benefitted from our involvement – we are proud that the process has felt nothing like “ticking a box”!

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