BRC patient representatives: our experiences

Patient and Public Involvement: Experience, Impact and Benefits.

Representing the patient voice at the BRC

In 2017, the BRC appointed a patient representative to each of the eight Research Themes, all of whom have direct experience of cancer either as a patient or as a carer.

The patient representatives meet quarterly to provide strategic leadership in PPI/E, identify the training needs of both patient representatives and researchers and also to promote good practice in PPI/E. The Chair and the Deputy Chair of the group, both patient representatives, also provide patient voice at the governance level of BRC.

Patient representatives: our experiences

The BRC patient representatives are involved in a wide range of activities, across all stages of the research cycle to ensure the perspective of patients and the public are embedded within the decision-making processes in our research studies. They also help researchers to write clear and easy to understand patient literature, and assist with and/or co-design research applications. They also engage with other patients, carers and public to promote the research being carried out and the progress made.

An uncommon cancer diagnosis: understanding the lived experience

Patient representatives for our Uncommon Cancers research theme, Alison Allam and Margaret Perkins, were instrumental in planning and delivering a pilot project to understand the lived experiences of patients with uncommon cancers.

Read more about how Alison and Margaret shaped this research and the impact it will have for patients.

PROFILES: monitoring patient wellbeing 

Della Dolapo Ogunleye, the patient representative for our Digital research theme, played a key role in helping to promote a new online tool to enable patients to record information on their quality of life.

Read more about why Della got involved in this project and the impact this new tool will have for patients.

Training and support for PPI/E

We offer training and support to patients and the public who are involved in research, and to researchers to help them involve patients in their work.