Patient Engagement Day takes place for Cancer Trials Centre

By CTC media team

The Translational Research Office (TRO) works closely with the CTC in setting up first-in-human cancer trials, providing regulatory and funding support for the clinicians and researchers who are involved. In the early stages of developing a clinical trial and securing its funding, this work increasingly includes the involvement of patient representatives. The engagement day was an opportunity for many of these representatives to meet in person for the first time.

Taking place at UCL's Institute of Education, a diverse range of speakers, panellists and attendees travelled from across the UK and Europe to take part in the event.

Dr Giulia Pellizzari, Lecturer and Education Lead at the CTC and organiser of the Patient Engagement Day, explains further: "Having spoken to our patient representatives, we felt the need to offer a programme for the day which went beyond a series of scientific talks. There was a real focus on the sharing of individual experiences and interactive discussion, and I think this benefitted all of us who attended.

"As a cancer research academic, I believe it is crucial that we, as scientists, researchers and trial professionals, come out of the ivory tower and engage in conversations with the patients and communities at whom our research is aimed."

Topics covered during the day included inequalities in cancer care access and why diversity in research is important, as well as issues such as how an individual's quality of life is measured when they take part in a trial. 

Patient Representatives Eddie Carr and Gill Murphy spoke about personal experiences surrounding their diagnosis and trial treatment, while the CTC itself shared video material from its ongoing project to interview people who have taken part in its trials. The project's aim is to create a resource of accessible information for future participants in clinical research, with the voices of former research patients at the centre of it.

Among those leading afternoon workshops were B'Me Against Cancer, a charity which has partnered with the CTC to improve awareness of clinical trials in black and minority ethnic communities in the UK. A summary of another workshop, 'Barriers and solutions to participation in clinical trials' (led by Patient Representatives Gill Isherwood and Eddie Carr with Linda von Nerée, Patient and Public Involvement in Research Associate at the CTC), can be read here.

UK charity Ovacome hosted a stall throughout the day, where they discussed their work in providing support and information for people with ovarian cancer.

Speaking after his talk, Eddie Carr felt the day was a success: "Health research is best served and improved when many voices are heard and a greater diversity of voices is an important factor in the pursuit of addressing and reducing known health inequalities.

"It appears that from the top downwards the CTC is keen to engage and sincerely listen. CTC staff recognise the importance and benefits of greater public interaction and engagement."

The event featured multiple opportunities for the attendees to play an active role in providing observations about Patient and Public Involvement (PPI) in research beyond the allocated Q&A sessions: patients, carers and public partners used an interactive board, completed a custom-made questionnaire during the day, and a feedback form after the event. All of these were used to capture qualitative and quantitative new insights into how PPI can impact rates of recruitment and retention in clinical trials.

Meanwhile, research coordinated by the CTC continues to have an impact, with findings from its CRUK-funded lung cancer study TRACERx appearing recently in the journal Nature. Patient representatives were key in developing information about the study for the public as it began to recruit participants.

A full list of activities and speakers from the day can be found here.

Links:
B'ME Against Cancer | www.bmecancer.com/
Ovacome | www.ovacome.org.uk/

Read more:
TRO Blog - Workshop ‘Barriers and Solutions to Participation in Clinical Trials’ at the Cancer Trials Centre Patient Engagement Day on 23 June 2023