Foundations of Patient (Lived Experience) Leadership


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

4 weekly sessions of 2 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

This course lays the foundation for understanding patient leadership – it 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 the course

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

This stellar course with such a great teacher in David really was terrific. In a field that doesn’t always offer you the good “feels”. We had an outstanding group, lead by an outstanding facilitator in you. Your kindness, thoughtfulness, clarity, and dogged determination to have us think, feel, and share has been so rewarding to me in multiple ways. I have already used some of the jewels – both rediscovered in me, and ‘unearthed’ in this course to start a dialogue with my local hospital group to increase the impact of patient partner voices. Ultimately, this will make such a huge difference in not just how I engage, but how I feel about my engagement. To me, this is priceless. I really hope that we will continue to be connected.

Michael Halas

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 wish all involved in healthcare could attend this course. David's training was insightful, thought-provoking & developed my knowledge of approaches and attitudes towards meaningful service user engagement. It built my confidence and helped me to understand that my 'skills' have value. I have been empowered in my role.

Someone with a long-term health condition

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


September 8th; 15th; 22nd; 29th

Cohort A (7:30am - 10:30am UK time)
Foundations of Patient (Lived Experience) Leadership programme

September 8th; 15th; 22nd; 29th

Cohort B (5pm - 8pm UK time)
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.