As readers of The BMJ will know, leadership is a widely discussed and hotly debated topic across the NHS at the moment. It’s also a theme that permeated the NHS Confederation Conference in Liverpool last week. Of particular interest to me was the issue of patient leadership, as I was asked to speak at a plenary session called “Patients in the Driving Seat” on the last day of the conference.

As I walked around the conference, I heard much talk of the need to involve patients and work with them—some of it tokenistic, but much of it well meaning. Various sessions highlighted the value of working with patients in different ways, and provided examples of patients who had managed to bring about new services, or shape old services in a new way.

There was, however, a lot of confusion about the concept of “patient leaders.” It sometimes felt like people were using the term “patient leaders” as a politically correct word for “patients,” without understanding that the concept should really force us all to think differently. The main exhibition hall, for example, featured a stall with an artist depicting some of the main conference themes; “Patients as Leaders” was one of these. The artist was drawing what she had heard from those attending the conference, but most of what had been sketched did not actually depict patients as leaders. There were pictures of patients being consulted, patients providing feedback, and even patients becoming outraged. Patients leading change, or working in partnership with managers and clinicians didn’t feature.

The Centre for Patient Leadership defines patient leaders as “patients, service users, and carers who work with others at strategic levels to influence change in health and healthcare.” It also notes that patient leadership is more than patient and public involvement (PPI), and that patients are a vast, untapped asset within the healthcare system. But if that’s true, what does it mean for the NHS?

One thing discussed during the plenary session was the need to create an environment in which patients, managers, and clinicians can work together—to move beyond the “us vs. them” dichotomy that often permeates PPI work. The basis for this has to be trained individuals who are able to work in a professional way, for one thing that the concept of patient leadership encourages is the need for patients to be trained to work with, and within, the healthcare system.

One frequent criticism of patient involvement work is that patients seldom see past their own experience, and too often focus on things like parking and poor quality food. It would help both the patients and managers enormously if the way in which patients are involved was better designed, with outcomes for success better defined. But it is also vital to provide training and support, which enables patients to understand how their experiences of the health system can inform thinking on a wider range of issues. Some patients will be able to do this because they have backgrounds and previous experience that they can draw from, but many others will not. Even those who have “professional” backgrounds need support to understand the structure and culture of the behemoth that is the NHS.

It’s never easy to appear on the last day of a conference as people are tired, some have gone home, and concentration is waning. The “Patients in the Driving Seat” session was, as one attendee remarked, excellent—but it was a huge shame that more people weren’t in the audience. That discussions on patient leadership are taking place is a good step forward, and it felt like there was real momentum behind some of the ideas we discussed. Even greater change might occur when sessions like this are better attended.

Ceinwen Giles is an expert working in the field of patient experience. She is currently undertaking a Clore fellowship in social leadership, and is a trustee of Shine Cancer Support.

Competing interests: I declare that I have read and understood the BMJ Group policy on declaration of interests and have the following interests to declare: I have received consulting fees for work delivered to GlaxoSmithKline. I am a trustee of Shine Cancer Support and the Point of Care Foundation. I have had travel expenses reimbursed (but no other fees) for speaking by the King’s Fund, Macmillan, Lymphoma Association, and the NHS Confederation.

Read about the launch of The BMJ‘s patient partnership strategy.