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Patients and families

Patient, Family and Public Involvement (PPI)


Are you interested in becoming involved as an advisor to palliative care researchers in the Cicely Saunders Institute?

We would like to draw on the invaluable experience of people like you to:

  • help shape our research,
  • advise us on promotional and informational materials and
  • support us in disseminating important research findings to the public.

Check out our latest Patient, Family and Public Involvement Newsletter to get an idea of what involvement at the CSI means.

 We are pleased to invite you to join our NEW online forum for patient and public involvement in research at the Cicely Saunders Institute:

 The aim of this online forum is to enable patients, families, and members of the public with an interest in palliative care and  rehabilitation research to actively work together with researchers at the Cicely Saunders Institute. This online forum will allow for early and more flexible involvement in our research, in addition to the in-person involvement opportunities.

 If you would like to be involved, please visit and sign up to be a member.

 Please feel free to tell others who may be interested about this new online forum. 

Examples of our patient, family and public involvement work

A project to improve education about end of life care

Project Summary:

The Transforming End of Life Care (EoLC) project aims to evaluate and refine a current training course in compassionate end of life care and communication skills, and collect data to inform the development of new course material (e.g. extra modules for specific staff groups) and determine the best way to assess effectiveness of EoLC training for non-specialists in the future.

Why involve patients, family carers and members of the public?

We sought PPI involvement to provide feedback on our plans for interviews and focus groups with healthcare staff and volunteers, and later with patients and families, plus feedback on our findings. We will also seek their assistance with integration of findings across the study arms into concrete and coherent recommendations for future training programmes, and with future dissemination of findings.

How many lay people are/were involved?

Five - one with patient experience, four with carer experience.

How has their involvement benefitted the research?

Though still in the relatively early stages of the project our PPI group has already impacted on the project. During our first PPI meeting it was helpful to hear their first-hand experiences of both good and poor end of life care. Since then our PPI group have provided feedback and informed subsequent changes to our focus group topic guides, where we ask GPs and volunteers about their training needs and preferences. For example, one member suggested how ‘experts by experience’ could be used within end of life care and communication skills training, and this was added to the topic guide for discussion with both participant groups. Another member suggested ways to clarify our topic guide, particularly for the volunteer focus groups, by removing jargon and technical terms that were taken for granted by the research team. Their insight so far has been extremely valuable and we look forward to their continued involvement as the project progresses.

A project to understand the complex needs of patients in palliative care

Project Summary:

C-CHANGE is a five-year research programme developing and validating a patient-centred case-mix classification to accurately capture the complex needs of adult patients with advanced disease and to fairly allocate resources to meet those needs.

Why involve patients, family carers and members of the public?

Involvement of patients and the public is important to help ensure that the project is relevant to the needs of patients and their families and will help shape a better piece of research and inform the delivery of better care.

How many lay people are/were involved?

Seven people from diverse ethnic backgrounds.

How has their involvement benefitted the research?

Patient and public involvement has had a significant impact on the project. All C-CHANGE advisory group members have experience of being cared for or caring for someone with advanced illness. Active involvement of patients and the public in the project focuses on improving research quality and outputs, and maximising benefit to patients and families, through relating case-mix, needs and provision more explicitly to their experiences. We adopt a flexible approach to patient and public involvement, so not all members of the group are expected to be involved with all aspects of work. Based on their ability and availability as well as their particular areas of interest and expertise, they have substantially contributed to sharing views and experiences of care in advanced illness (especially towards end of life). They have also read and commented on documents such as our proposals and patient information sheets, and helped refine outcome measurement tools and interview schedules. We are using a series of videos to record their involvement and impact as the project progresses over the next few years. A great video has been made by a patient representative to comprehensively capture and demonstrate the impact of patient and public involvement in the C-CHANGE project.

A project piloting palliative care for frail elderly people

Project Summary:

The study aims to develop and evaluate the feasibility of the new short term  integrated palliative and supportive care (SIPS) service for frail older people in community settings (including care homes), delivered through integrated working between specialist palliative care services and community nursing teams, and close working with GPs and geriatricians.

Why involve patients, family carers and members of the public?

Patients and the public bring with them their own experiences and knowledge that are beneficial to the study and potentially improve the quality and relevance of the research.

How many lay people are/were invovled?

We have seven members of the Independent Project Advisory Group (IPAG); three members have worked with us since 2010 and the other four since 2011/2012.

How has their invovlement benefitted the research?

PPIs have been influential in the OPTCare Elderly study at all stages of the project. Initial meetings involved members discussing and reviewing the study focusing on the relevance of the topic area for elderly people and their families, the acceptability of the proposed research methods and dissemination. The comments received informed the protocol development. This included refining the plain English summary, adapting the post-bereavement survey for families/carers of elderly people, and engaging elderly people in the stakeholder consultation (e.g. involving older people attending a day centre and use of a postal survey, and advertising the research project through local voluntary organisations’ newsletters). PPI have also been included in the stakeholder consultations in the development of the intervention. The PPI group are advocates for older people and bring varying experiences from their voluntary activities as well as personal experiences of frail older people at the end of life.  As this study is about introducing a new service to frail older people in the community, the acceptability of the service to patients is of particular importance. PPI involvement has been particularly helpful in improving clarity and appropriateness of language of participant documents and the dissemination of findings, particularly at the local and regional level (e.g. radio broadcast and Pensioner Forum newsletter).
A project to promote the use of outcome measures in palliative care

Project Summary:

This project is a service development initiative that seeks to implement a suite of outcome measures into routine palliative care. Additionally the project includes two research projects (linked to C-Change).

Why involve patients, family carers and members of the public?

For the research components, the projects need PPIs to advise on research design, materials and strategy, and to support dissemination.

How many lay people are/were involved?

Three people: two carers, one patient (patient also invovled in C-Change).

How has their involvement benefitted the research?

Invovlement to date has been very helpful during the planning stages of the projects. Particularly, our PPIs helped us to simplify our advertising, recruitment and consent documentation and were extremely vigilant in their review of spelling and grammar. They also had an impact on speific parts of the protocol, for example to ensure our procedure for patient observations was acceptable to patients. One of our PPIs also accompanied us to the Research Ethics Committee (REC) review of one of the two research projects and was extremly well received by the committee (who said that they had never before had a patient attend the meeting). We feel his attendance was vital to help us get the project approved by the REC.

Two projects looking at support for carers

Project Summaries:

They were both mixed methods studies which aimed to increase understanding of the problems and unmet support needs facing people with long-term neurological conditions (strokes, brain injuries, epilepsy, progressive conditions etc.), and their family carers, and to inform the development of cost-effective services for this group.

Why involve patients, family carers and members of the public?

To ensure that the research questions addressed issues relevant to carers and to guide the progress and outputs of the project from a lay user perspective.

How many lay people are/were involved?

Numbers varied across the two projects and over their duration but ranged from seven to ten and included both family carers and representatives from voluntary organisations at quarterly meetings.  Separate steering group meetings were held with applicants and the research team.

How has their involvement benefitted the research?

They helped develop the content and layout of questionnaire surveys and ensured that questions relevant to carers were included; advised on circulating information about the research and facilitated participant recruitment; contributed to the analysis of findings by coding short answer questions from returned surveys and, working in pairs, to build codes into themes through discussion and consensus; critically reviewed and added to sections of the final reports to the Department of Health; participated in a dissemination workshop for stakeholders.

If you are interested or would like more information please contact us at We look forward to hearing from you!


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