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

Bringing Breathlessness into View exhibition

In collaboration with artists and local people living with breathlessness, we have created the Bringing Breathlessness into View exhibition, which aims to raise awareness of what it is like to live with breathlessness, and enable people to access support to manage breathlessness well.

Our research shows that patients with breathlessness feel poorly understood, stigmatised, and less able to participate in life. Hull is an area with high rates of respiratory disease and yet breathlessness management is not routinely offered.

This multi-media mobile exhibition has been co-created by local people living with breathlessness, photographic and sound artists and health researchers. The exhibition has striking images and engaging sound recordings to help people understand what it is like to have breathlessness.

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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.  

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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.

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