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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

Get involved

 

 

Parents, children, and young people

There has been growing emphasis on the importance of working with patients and the public when undertaking research, charity work and service design. However, those most likely to be involved come from a narrow section of the population e.g., people from older age groups, white ethnic and higher socio-economic backgrounds. Many groups are underserved and underrepresented in patient and public involvement (PPI) activities, including parents, children, and young people, and there is limited guidance on how best to conduct PPI work with these groups. At the Cicely Saunders Institute, we pioneer the very best in PPI with parents, children, and young people, so it is sensitive to their specific needs and meaningful for all involved. Resources on best practice when working with parents, children, and young people can be found below. Thank you to all the parents, children, young people, and professionals who have contributed to these projects.

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Outputs

 

Related news and events

 

Information Centre for Palliative Care Support

Find Support Services

Find Support Services

Cicely Saunders Institute Public Involvement forum; where you can find out about research.

 

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