NHS Logo


Patient participation

Working with the New Citizenship Project we have explored how, when and where patients currently get involved in our own network and how we can share and replicate examples of great patient participation across the whole system.

Working with patients image

Patient participation film

- Read less + Read more

We found that the language surrounding the role of patients is often poorly understood with terms representing very different ideas – interaction, participation, experience, engagement, involvement – being used interchangeably across the trust (and more widely across the NHS). As a result there seemed to be no clear framework for understanding the significance and quality of existing patient interaction or making recommendations for improvement.

  • We used ‘appreciative inquiry’to focus on identifying what is working well, understanding why it is working well and then how this can be replicated across the network. To do this, we:
    • defined the terms associated with patient participation and gathered best practice examples from inside and outside the networked care model; and
    • reviewed existing patient interaction to understand critical success factors that make it effective

Patient participation drawing

Proposed terminology

Patient experience
Initiatives that relate to patients as customers, gathering personal feedback in order to understand and improve service provision, but which fundamentally see patients as ‘them’ not ‘us’.

Patient engagement
Initiatives that seek to further inform patients about their condition and to create the conditions for patients to become more active participants in their care or that of their local or condition community, providing information or other resources, but which do not actively seek to structure or harness the outputs this might create.

Patient involvement
Initiatives that actively seek to harness the expertise-from-experience of patients as a crucial input and as peers alongside those with other forms of relevant expertise.

Patient interaction
All forms of interaction with patients, from experience through to involvement.

Patient participation
A term which can be used to cover both engagement and involvement.

The next step was a workshop with 40 people including 15 patients to co-create an initial set of recommendations for improving future patient interaction and participation.

After this we:

  • developed a patient interaction framework identifying the different levels of interaction patients can have with a hospital or unit and its services: patient experience, patient engagement, patient involvement and patient participation.
  • made recommendations for the further development of patient participation within Moorfields.
  • drew out the consequences of this approach for any single specialty service in providing networked care.
  • created a step-by-step guide for single specialty services to best harness patient interaction in a networked care model – ‘the five steps‘ guide.

The guide can be used by any organisation wanting a process to embed and provide evidence for the benefits of patient participation across a network. The patient participation report provides more detail (small file or very large file with embedded films).

“Despite the growing acknowledgement of the value of engaging patients in their healthcare, the term ‘patient engagement’ is at risk of becoming nothing more than a “hot buzz phrase,” as it lacks a shared definition and, consequently, shared guidelines for interventions.”
From: The Challenges of Engaging patients in Healthcare, Journal of Participatory Medicine, 2014


Participation stories

Irenie Ekkeshis

Carol Winmill

Dr Valerie Juniat

John Allen

Annie Folkard

Dr Andrew Scott