Tag: Patient and Public Involvement

Do we need such a devastating global pandemic to raise the profile of research?


On Clinical Trials Day, Fran Husson discusses how receiving treatment for Acute Myeloblastic Leukaemia made her aware of the value and impact of research.

It is impossible, as a patient, not to think “vaccination” when asked to engage in some reflection about “Research”.  Vaccines would not have been created so swiftly to combat Sars-CoV-2 if strong and well established multi-disciplinary cohorts of researchers, within prominent academic institutions, had not been in place to mastermind clinical trials and produce an effective immunisation response to the pandemic.

This begs the question of Patient and Public awareness of research, whether for clinical purposes or service delivery of health and social care.  Do we need such a devastating global pandemic to raise the profile of research?

In my case, a late diagnosis of Acute Myeloblastic Leukaemia provided the lightning bolt to make me aware of research. Hospitalised in isolation for ten months, under round-the-clock treatment from clinicians who also involved me in different clinical research projects, I could not but appreciate the full value and impact of research. (more…)

Why good cancer research must have the patient at the centre

Kelly Gleason, CRUK Lead Nurse, explores the value of patient and public involvement in cancer research and how it can improve the quality and outcomes of research.

Patient and public involvement (PPI) is increasingly recognised as important. Funding bodies are asking for more and more from researchers in regard to patient and public involvement. They want to see evidence of authentic and ongoing relationships between researchers and the public that is informing what is being researched, how it is being researched and how findings are shared with the public. Funders want to see more co-creation between researchers and the public and for this to happen, researchers require help accessing larger patient networks and support in maintaining relationships with patients.

My journey with PPI at Imperial

I became involved in patient and public involvement almost a decade ago – it was a relatively novel concept back then. The need for cancer researchers to access patients to involve in their research was increasing. The Imperial Cancer Research UK Centre, where I work as a Lead Nurse, established a group of patients and members of the public for Imperial researchers to have easy access to the patient voice. The group served as a resource to researchers and inputted on everything from grant proposals to lay summaries. They helped us create a research culture at Imperial where patients were integral to what and how we carried out cancer research. (more…)