Patient and public involvement and engagement

We are committed to involving patients, carers, families and local communities as active partners in shaping our research. We want to make sure that people with many different perspectives and experiences have the chance to influence what we do and how we do it. This helps us to focus on what really matters to people.

Examples of our public involvement and engagement

Supporting young families when a parent has died

Alex Wray, one of our PhD students, has been working with children with experience of the bereavement of one parent, and their bereaved surviving parent, to understand and recommend how both groups can be better supported. She has worked with bereaved children and parents to plan this study and has been guided by them in analysing and interpreting her in-depth interviews, about their needs, support received, and what is most helpful.  Using the rich data from her interviews, she has co-constructed – with PPI partners - the themes and findings.

Families involved in the study were very keen to contribute. They wanted to help make a difference and have their stories heard. The findings have helped them find meaning in their own experiences and others to gain insight into their experiences. As one parent said: "Probably the only good thing that can come out of my bereavement is helping others by lessening their isolation through increased understanding of such experiences" (parent). Children also valued the chance to help other children and being able to talk about grief simply and openly without it being perceived to be a ‘difficult’ subject.

Better End of Life programme

The Better End of Life programme, funded by Marie Curie, and conducted jointly with King’s College London and the University of Cambridge, publishes our next report in October 2022, titled:

“Mind the gaps: understanding and improving out-of-hours care for people with advanced illness and their informal carers”.

We have worked collaboratively with a group of PPI partners throughout the Better End of Life Programme, to shape and inform the research. However, for this forthcoming report, we – together with PPI partners – decided to do some additional work.

Therefore, in May 2022, a PPI workshop was held with an independent facilitator, to consider all of the research findings which inform the report, to share how these did (or did not) reflect the experiences of PPI participants in the workshop, to consider what insights their experiences added to our understanding of out-of-hours care, how this related to the research findings, and how to incorporate these perspectives into the report.

As a result of this work, the report contains a section called ‘The people’s perspectives’, written by PPI partners themselves, and based on the workshop outputs. This section describes some of their lived experiences of out-of-hours care. It resonates strongly with – and reflects on - the collated research findings and provides clear recommendations which add considerably to the report.

More information about the Better End of Life programme

RESOLVE: Improving health status and symptom experience of Yorkshire cancer patients

We have been working with 11 palliative care service providers across Yorkshire to understand the best ways to implement Person-Centered Outcome Measures into clinical practice, in order to improve the quality of palliative care that is provided to patients and their families.

As part of this project, we have engaged with healthcare professionals of varied roles and experience in organising and conducting regional workshop conferences, training days, and tailored support that responds to the most common challenges that they have experienced when implementing outcome measures. These events have been well-received and have acted as a valuable platform that has facilitated shared learning between participating sites and the research team.

An integral part of this work is building a Yorkshire-wide Palliative Care Outcomes Registry which will drive quality improvement in participating sites by using aggregated outcomes data to provide them with service-level feedback on areas of their service working well to address patient symptoms and concerns, and areas for improvement. To ensure that this Registry is feasible, acceptable, and includes information that reflects the things that matter most to patients, we have engaged with a Palliative Daycare Patient Group at Marie Curie Bradford Hospice. Patients appreciated the opportunity to inform the development and design of the Registry and offered constructive feedback which we have since used in further refining our protocol and patient-facing material.  

More information about RESOLVE

CANASSESS: Improving care for cancer patients

Cancer patients and their carers often have problems related to cancer that they need more help with. Our research aims to test whether a new cancer needs assessment tool to help GPs and practice nurses improves care and support for cancer patients and their family carers. However, before we can do this big study, we need to see if this possible.

The CANASSESS study aimed to see if a larger study (CANASSESS2) with more GP practices, patients and carers was possible to run. The study tested the use of a tool by GPs and nurses to help them assess patients’ needs. We needed to know if GPs and patients would take part, how a larger scale study should run, if patients/carers found the questionnaires meaningful and useful and if there was anything else we needed to do to improve the study design for CANASSESS2.

We conducted a trial with cancer patients and carers from GP surgeries in and around Hull. Patients and carers who took part in the study met with one of our researchers and filled out questionnaires about their experiences of cancer and any unsolved problems they might have. Patients were then asked to meet with their GP for a needs assessment appointment. The GP practices had been provided training to use the new needs assessment tool which they could use for this appointment. Patients and carers then completed the same study questionnaires again at 1, 3 and 6 months.

Some patients/carers also took part in an interview about their experience of the study. Patients and carers were asked about how they felt about their current care, their GPs’ involvement in their care since their diagnosis and their views on the study questionnaires. Finally they asked patients/carers what they thought about the needs assessment appointment with their GPs compared with usual care.

Following completion of the trial, patient and carer participants were invited to an event to hear the results and share their views on our preliminary analysis. Our team were able to use the views expressed by participants to refine our analysis and inform the design of the upcoming study CANASSESS2.

More information about Canassess