System leaders and patient leaders: learning from a new relationship

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The idea that citizens should be leaders in the services they use is far from new, yet it is still at odds with many aspects of NHS culture. A recently launched programme by The King’s Fund is offering the chance to foster a new type of relationship between citizens and care systems – and to learn from how it evolves.

The relationship between the health care system and those who receive care is emotionally charged, complex and built on a long history, with medical professionals and managers often seeming to position themselves as unquestionable authorities. Yet the desire to let patients and service users take an active, equal role in their relationship with care systems has been on the public agenda for decades.

Patients and service users bring a different but equally important perspective to planning, driving and monitoring health care delivery and the NHS could gain much from harnessing their experience and energy in a more systematic way. There is also an ethical argument that a tax-funded service providing health care for citizens in a democracy should be led by those citizens.

There is a degree of uncertainty and novelty about what this new relationship will entail. The health care system has traditionally held the balance of the power and relinquishing power is rarely a comfortable process. Patients who wish to lead change often report resistance to their ideas being introduced or their voices being heard. There is no well-developed common language that would allow the relationship to flourish.

From a regulatory standpoint, patient leadership has long been a conceptual part of the political discourse. But the NHS five year forward view recognises that our approach is still short-sighted and ineffective. Some pockets of excellence exist, especially in mental health, but many of these efforts have been tokenistic at best.

The King's Fund has recently launched the Leading collaboratively with patients and communities programme, which brings together sets of ‘pairs’, each pair comprising a patient leader and a system leader, to help them develop a fruitful, balanced relationship while working together on a project. We'll be exploring and sharing learning about how this relationship forms, what its determinant factors are and how it can be encouraged to flourish.

During the first two modules of the programme, it has been interesting to observe the issues being addressed, the discoveries and the balance emerging between the two individuals in the pairs. As we support participants to grow as patient leaders or as health care system representatives, we are also trying to understand what is happening in the room. By the end of the programme, we hope to be able to describe what a positive and effective patient leader/system leader relationship looks like, and explain how it develops and what makes it work.

When we undertake complex tasks we are often driven by many subtle, internalised norms and behaviours that we have unconsciously developed over time. To understand fully what makes someone successful at certain tasks, it is important to identify these unspoken rules of behaviour. The behaviours that we want to identify during this project are partially shared by the two individuals in each pair, but are partially unique to each side. Invariably there will be differences in drivers, concerns and accountabilities between patient and system representatives.

We are not simply attempting to understand what works, but are going deeper to understand the conditions that enable it to work. Considering all these factors means we can produce a more in-depth analysis that others can learn from. The wider attempt to reframe the relationship between patients and the health care system is, I believe, an inevitable expression of our current times and a goal we must pursue. As a society, we have changed and our approach to health care must change with us. Harnessing patient leadership will allow us to develop better, more sustainable services for the population while renewing the covenant between the NHS and the population by empowering patients.

We can also do more to improve how we study and disseminate the knowledge that emerges in all aspects of our practice. I hope that our work on this programme can be taken further and used to improve understanding of the pockets of excellence that emerge in the NHS and allows for innovation to be shared for the benefit of the largest possible number of people.

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Pearl Baker

Independent Mental Health Advocate & Advisor/Carer,
Comment date
27 November 2015
I would like to see a completely different approach. The (pairs idea) is another layer on the cake.

The CQC are Independent, but oversee many aspects of health and social care.

Carers and Independent Mental Health Advocates and Advisors like myself, are 'experts by experience' I do NOT want a (pair) saying what is required to improve the system of health & social care, we all know that (if we were honest with ourselves)

The CQC have regulation 20 'duty of candour' and there is a 'duty of care' both of these hold most the answers to what is going wrong with health & social care, and The Care Act 2014 which for the first time give Carers a Right in Law.

I would welcome the opportunity to be (paired) up with a CQC Senior GP Inspector.

'Integration' will and cannot happen (ever) until the obstacles are identified, my suggestion above would go someway in solving the problems, and identifying the 'tools' to overcome the deficiencies in the system of NON Integration.

nicholas BAIGENT

Professor Emeritus,
London School of Economics
Comment date
27 November 2015
Concerning the point that patients and professionals each have norms and expectations of each other that differ: I wonder if you have a general framework for thinking about interactions in the presence of such differing norms and expectations? The Nobel Laureate, George Akerlot, togther with Rachael Kranton, introduced a framework for think about exactly these sorts of interactions in the Quarterly Journal of Economics (2000). It would be particularly useful in understanding the mechanism by which norms affect behaviour via incentives in strategic interactions. Furthermore, involvement in strategic interactions in which norms are important often sees Identities (patient/professional), and therefore behaviour, change during interactions. These changes may vary from "going native" to "polarisation". It is important to understand the determants of these changes during interactions.
These comments are based not only on my research background, but on very ineffective attempts of my GP at patient participation, and participating in a Patient Reference Group on PALS and Complaints at Barts Health.

Tim Hall

Health Entrepreneur,
Comment date
01 December 2015
Patients cannot lead, they are not qualified for the role, but they can collaborate in a virtual partnership with a future genomic analysis hub and their family doctor, who will be provided with a very precise diagnostic profile of their patients. The biggest scope for beneficial change lies with Society taking a more responsible role for the maintenance of their own health. This area is currently void of ambition, imagination and understanding. Suggest you have a look at to see what I mean.

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