Patient and Public Involvement

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.

Patient and Public Involvement is sometimes referred to as PPI.

How can I get involved?

You can get involved in our research by joining the University of Hull’s Institute for Clinical and Applied Health Care Research’s PPI network, Involve Hull.

They are looking for patients, carers and people who use health and care services to join us.

You can find out more about Involve Hull on the University of Hull website. You can also email InvolveHull@hull.ac.uk.

HHTU PPI Case Studies

MOI-A – Matrix-Directed Therapy In Older Adolescents And Adults With Osteogenesis Imperfecta

Patients and families living with osteogenesis imperfecta (OI) are at the heart of the MOI-A study. From the outset, we have worked closely with patient representatives to ensure that the study reflects the priorities, experiences, and needs of the OI community.

Building a Patient Advocacy Group

In July 2023, we established a Patient Advocacy Group (PAG) to create a dedicated forum for patients and representatives to share their perspectives and help shape the study. Through a series of meetings, the PAG contributed to the development of a patient engagement plan and provided valuable insights into key aspects of the trial.

One of the strongest messages from the PAG was the importance of addressing symptoms that have the greatest impact on daily life, particularly pain and fatigue. The group also highlighted practical challenges that could affect participation, including potentially restrictive eligibility criteria (such as previous or current bisphosphonate use) and the impact of a demanding visit schedule. These discussions helped the research team better understand patient priorities and consider ways to make trial participation as accessible as possible.

Bringing the OI Community Together

In June 2024, we organised a multi-stakeholder meeting (MSM) alongside the annual Italian OI meeting. This event brought together patient representatives, clinicians, researchers, and other stakeholders to discuss important topics related to the study and the wider OI community.

The meeting was co-developed with patient representatives to ensure that the discussions reflected real-world experiences and addressed questions that matter most to people living with OI. It provided an opportunity for different perspectives to come together and strengthened collaboration between the research team and the community.

Improving Information for Patients and Families

Working together with the PAG, we developed a patient information factsheet to accompany the informed consent documents. The aim was to make information about the study clearer, more accessible, and easier to understand for patients and families.

By providing information in a patient-friendly format, the factsheet supports informed decision-making and helps potential participants feel more confident about understanding what involvement in the MOI-A study means.

Raising Awareness and Supporting Recruitment

We have worked with several patient organisations to share information about the MOI-A study and increase awareness across the OI community. Through newsletters, websites, social media platforms, and community events, we have helped ensure that patients and families have access to information about the study and opportunities to get involved.

These outreach activities have been essential in building connections with the community and supporting recruitment efforts.

Looking Ahead: Continuing Patient Partnership

More recently, we have re-established the PAG and welcomed new members to continue strengthening patient involvement throughout the study. The group is now supporting trial promotion activities and helping us explore ways to improve recruitment.

Alongside this work, we are beginning discussions about the development of a future patient-centred Phase III study. A key focus will be ensuring that patients and patient representatives are involved from the earliest stages of planning and design, helping to create research that is meaningful, relevant, and responsive to the needs of people living with OI.

Through ongoing collaboration, the MOI-A study continues to demonstrate the value of working with patients, not just for patients.

CANFit – A personalised home-based exercise programme for patients with cancer in Yorkshire

The CANFit study aims to generate much-needed research on whether a tailored home-based exercise programme could positively impact cancer outcomes and survival. Exercise shows promise in improving cancer patients’ health, yet current evidence is limited.

To ensure the exercise programme meets patient needs and preferences, we collaborated with those diagnosed with or cared for someone with a cancer diagnosis across a series of interactive workshops.

These patient and public involvement members provided invaluable insights rooted in their cancer experiences. Their thoughtful feedback directly shaped key aspects of the study website and intervention components. For example, they offered perspectives on optimising the website content, structure, navigation and design to boost engagement and usability based on their needs as end users. We worked closely with our patient and public involvement members to make the exercise programme patient-centred. Their contribution throughout the planning stages has been integral in shaping the project’s direction.

Looking ahead, we have scheduled ongoing engagement events with patient partners to gather continued perspectives as the programme progresses. Patients will have opportunities to evaluate if it reflects their needs and how it could be improved. Their insights will be crucial in refining the exercise programme to best support people with cancer.

LIPS – Leukaemia in Pregnancy Study

For the Blood Cancer funded Leukaemia in Pregnancy Study, we were looking to establish a UK-wide registry to specifically monitor the management of Acute Leukaemia, or high-risk myelodysplasia in pregnancy, and the associated outcomes for both the mother and neonate.

As part of our application to the Confidentiality Advisory Group and the development of the database, Judith Cohen (Director of HHTU) and John Turgoose (Information systems manager) held a patient and public involvement session to support important elements of the study. The session led to important decisions including when it was appropriate for clinicians to approach patients is what is a sensitive situation and when it would be appropriate to process patient data without consent.