Creating a new patient and public involvement (PPI) group for OpenSAFELY NHS Talking Therapies project - introduction

Background

Our mission was clear; to bring together a group of around 12 people with firsthand experience using the NHS’s adult psychological interventions service - NHS Talking Therapies - to collaborate with us on our new Wellcome-funded OpenSAFELY NHS Talking Therapies project, as a new patient and public involvement (PPI) group.

For me personally, as a patient and public involvement and engagement manager, this was exciting. It offered the chance to build something from scratch, with foundations of patient and public involvement (PPI) that’s open to everyone, meaningful and seeks to create shared value; for research, the researchers, and the public contributors themselves.

What is PPI, and why does it matter?

PPI isn’t about the general public being studied in some way as research subjects. It’s about research that’s done with patients or the general public, with their views and opinions, experience and advice shaping how research gets done. It’s very different from research participation.

Over the years, I’ve realised that what lies at the heart of PPI is accountability. The general public, through tax or donations, are often funding research, so they have a right to know if our research is necessary and beneficial; if it’s ethical; and if it’s being carried out in the most efficient and effective ways. Looking under the bonnet can help build trust and, crucially, can help make research better. It can also help research have a greater impact. But for this shared value to be created, the public has to be let in.

Why NHS Talking Therapies?

The actual project’s going to see the NHS Talking Therapies dataset added to the OpenSAFELY platform to create a new national resource - a treasure trove of data, if you like - for studying psychological therapies.

We’re also going to set up a unit to support researchers new to electronic health record research, so they can use this treasure trove safely while achieving its maximum potential. We hope that the research will shed light on exactly what therapies work for whom and why. And it should lead to a boost in the effectiveness of early interventions for anxiety, depression and psychosis.

That potential also brings responsibility. The data comes from people’s experiences of NHS care and treatment, and so there’s a duty, as well as a need, to make sure different voices and experiences are able to influence mental health research.

What kind of PPI group did we want to build?

To help us achieve this potential, it’s important that the patients and public we’re collaborating with reflect the wide range of people who use the NHS Talking Therapies services (this was called Improving Access to Psychological Therapies or IAPT when it first started).

It’s also important that we try to bring in people who haven’t been involved in health research before, particularly from groups under-represented in PPI and research. This isn’t window-dressing. It’s about not leaving communities behind; it’s about helping to close the health inequalities gap. The research using the NHS Talking Therapies dataset should benefit everyone in society, not just certain cliques.

In theory, anyone who wants to get involved with health data research, whatever their background and circumstances, should be able to. After all, the term ‘patient and public’ applies to all the different individuals and communities that make up the country.

This is also the thinking behind adopting the Public Engagement in Data Research (PEDRI) Good Practice Standards for Public Involvement in Data Research, as the foundation of our approach to PPI. These 7 standards are all about enabling everybody to get involved effectively in data research by addressing some of the barriers. They cover data literacy and training, as well as equity, diversity and inclusion, transparency, two-way communication, suggesting ways in which researchers can apply these.

But what does all this mean in practice, as our new PPI group begins its story? Have we created a PPI group of people with a range of different demographic characteristics, experiences and backgrounds? Are we lowering barriers so people can get involved? And have we started to create a culture that’s welcoming and unintimidating? This has been my goal for our Experience-led Public Involvement Committee (EPIC).