Patients & the public

At the Cicely Saunders Institute, we integrate patient and public involvement (PPI) throughout our research, education, and clinical care. Our shared ambition is to improve the relevance, quality, and impact of our work, ensuring we continuously respond to the needs and priorities of patients, carers, and their families affected by life-limiting illnesses. Through working with people of all ages (from childhood to adulthood) who use health and social care services, we can best understand what is important and how our work could improve people’s experiences of care, treatment, and the services they receive. 

Please join our Public Involvement Forum to share your ideas about improving palliative care or rehabilitation research.

Our principles

• Respectful involvement that includes collaboration from an early research idea to sharing the results, accessible and responsive communication, support and learning, reflection and active listening, and opportunities for co-production
• Equitable, Diverse and Inclusive involvement of people with diverse backgrounds and experiences to reflect our local, national and international communities and the populations which palliative care, rehabilitation serve
• Flexible involvement that adapts to the needs of people living in complex and unpredictable circumstances, and to diverse project requirements

Best practice when involving parents in research and charity work

Researchers at the Cicely Saunders Institute at King’s College London and the Universities of York and Leeds worked with parents of children with life-limiting illness and bereaved parents, and Nifty Fox Creative to develop resources that provide best practice guidance on conducting PPI work with parents. This was funded by The True Colours Trust. Find out more below:

• An animation describing best practice when involving parents in research and charity work
• A leaflet (including an interactive digital version) summarising key points to consider when involving parents in research and charity work 
• Worked examples of involving parents in advisory boards and as speakers at events

Best practice when involving children and young people in research

Researchers at the Cicely Saunders Institute at King’s worked with children and young people, parents, the Sickle Cell Society and Nifty Fox Creative to develop tools that enable children and young people to be involved in research in a way that works best for them. This work was funded by an Independent Medical Education Grant from Pfizer and seed corn funding from King's. Find out what they said in our Sickle Cell Superheroes animation.

Meet the team