Foundations of Patient (Lived Experience) Leadership


A four-week introduction to Patient Leadership, led by David Gilbert

4 weekly sessions of 3 hours
Online via Zoom

Patient Leadership signals a breakthrough in healthcare that moves beyond traditional engagement and uncovers the pioneering and transformative work of patient leaders - those affected by life-changing illness, injury or disability who want to lead change in the healthcare system. Or ‘those who have been through stuff, who know stuff, who want to change stuff’. 

About this programme

The programme is designed for both patients and non-patients to explore together different facets of this emerging social movement. It is for Patient and Carer Leaders, health professionals, managers, non-clinical staff and those from the independent, voluntary and charitable sector. And open to international attendees.

This programme lays the foundations for understanding patient leadership. It leads you through the principles of patient leadership, what it is and where it came from, the qualities of an effective patient leader, support needed and models of embedded patient leadership. For patients, users, carers and staff (clinical, managerial).

The framework for May's course

The four 3-hour sessions take place on consecutive Wednesdays, between 4pm and 7pm UK time. Each session includes scheduled time for breaks from the screen.


Session 1 - What is Patient Leadership

  • The different tributaries of the ‘patient movement’
  • The failure of traditional engagement approaches
  • The emergence of ‘patient leaders’
  • Definitions and clarifications
  • What we bring - Jewels of wisdom and insight from the caves of suffering

Session 2 - The Effective Patient Leader

  • The Different Roles for a Patient Leader
  • What Matters – an anchor for the effective Patient Leader
  • Benefits of Patient Leadership
  • The four main capabilities
  • The different sorts of support needed

Session 3 -  Embedding Patient Leadership in Healthcare

  • The Patient Leadership Triangle (the Sussex MSK Model)
  • The Patient Director – a new role in healthcare
  • Culture, systems and processes
  • Progression routes & creating opportunities
  • The current climate for Patient Leadership

Session 4 -  Reflections and Next Steps

  • Reflections on the programme
  • Exploring issues in more depth
  • Your next steps
  • Your learning and support requirements

Further learning and support opportunities

Previous participants have decided to take part in continuing action learning sets to explore the issues they face. We are also developing a ‘Patient Leadership Network’ and will be discussing the process of this with you, to help co-design its functions. We also run this programme for organisations or health systems ‘in-house’ and/or help run tailored programmes. You can learn more on our services page.

What people have said

Would encourage health care professionals to attend this - thought provoking and made me see how we should (as opposed to current practice) engage those with lived experience in meaningful ways. Zoom in from home!


David Gilbert is like a Sherpa on Mount Everest. Tomorrow’s improvers in healthcare will come with both learned and/ or lived experience. It is important to demand knowledge and wisdom in a patient partner. This is where you learn from the best


Took David’s course and found it very helpful to experience the wisdom ‘at source’ from his many, many years of experience and reflection


Probably the first time I’ve joined a 2.5 hour evening session after full-on day at work and didn’t want it to end. An international mix of patients, clinicians, managers digging deep on leadership qualities is a powerful learning environment, superbly led by David Gilbert.

Helen Parker

It was a delight to meet you and participate in the leadership program. It was a wonderful experience – connecting through the the heart and mind with such a diverse rich mix of patient leaders. I love being challenged to think about new ideas and ways to look at things differently, or from a different set of glasses. I did that a lot which is a perfect way to kick off 2021. Personally, the timing was excellent. Your model and our discussion is helping me reframe some possibilities going forward.

Donna Rubenstein

I did the first cycle of this and thoroughly recommend it - provides both helpful framework for critical thinking and more practical strategy tips for getting things done. Well worth attending!

Lived Experience Practitioner


Foundations of Patient (Lived Experience) Leadership programme

About David Gilbert

David is Director of InHealth Associates. He is a former mental health service user and author of ‘The Patient Revolution – how we can heal the healthcare system’. He has 35 years’ experience of working with, and for patients. He was the first Patient Director in the NHS at the Sussex MSK Partnership (Central) and has been Head of Patients and the Public at the Commission for Health Improvement, and Patient and Public Involvement Director at NHS Croydon. He has also worked at the Kings Fund, OPM and Consumer Association.