CRUK City of London Centre Patient and Public Involvement and Engagement Funding Call 2024 awardees
Collaborative art project around ‘What does radiotherapy mean to you?’
Main applicant: Samantha Terry (KCL)
Co-applicant: Lisa Whittaker (KCL)
This project will bring together people who have had radiotherapy, their family members/carers, radiation researchers and clinicians to co-create a zine/book based on the question ‘What does radiotherapy mean to you?’
The project will be co-led by Dr Samantha Terry, Reader at King’s College London, CRUK RadNet City of London PPIE coordinator, Lisa Whittaker, and artist facilitator, Liane Harris (www.liane-harris.co.uk/). Participants who have taken part in previous PPIE projects will be invited to be part of this creative project; we will also invite them to bring a family member/loved one/carer to participate in the project alongside them. Everyone will come together in 4 online workshops (June-September) where Liane will introduce a selection of creative practices e.g. collage, photography and drawing and encourage people to try these methods and find a way to express their answer to our question. Following the workshops, everyone will send their finished piece to Liane who will collate these into the most appropriate way of showcasing the pieces, most likely a zine or book. These will then be printed and unveiled at a celebration event in October. At this event we will invite participants to come to London and meet in-person and see their finished work which will then be shared among our colleagues and networks. We hope this project will be a fitting way to celebrate the first 5 years of CRUK RadNet City of London but also act as a catalyst for future conversations between patients, carers, researchers (across CoL) and clinicians.
To host a networking event to discuss why we need Patient and Public Involvement (PPI) and Equality, Diversity and Inclusion (EDI) in Research
Main applicant: Ambi Williams (KCL)
Co-applicant: Harry Parkes (Patient representative)
Our South East London Consumer Research Panel for Cancer (SELCRP) comprises a motivated group of patients, carers, clinical, non-clinical and academic staff. It aims to support patient-focussed cancer research, advising on study design and delivery, such as review of patient information material, critique of data collection, and plans for dissemination of findings. Members provide their time on a voluntary basis and several research groups use SELCRP as a model to support their own set-up and management. The Panel has been able to advise these newer groups more broadly given their experience in study design, dissemination strategies, and how best to recruit participants. Patient representatives on the Panel include those living with cancer, and the group is hosted by the PPI Lead Ambi Williams.
We propose to hold an in-person event at the “Cell” (Queen Mary University London) for PhD students, clinicians and, PPI representatives from all City of London Partner organisations within cancer/research. The event will consist of a panel of excellent and passionate speakers consisting of PPI members and colleagues from across the Partner organisations creating a stimulating discussion, that will continue after the event, focusing on why including PPI and EDI within our research activities is hugely important. This will be a half-day event with a number of short presentations and the event will also have a question-and-answer session embedded within this.
This will also create an opportunity for PPI members, researchers and PhD students to network with one another, gain insights and share knowledge which can provide invaluable insights.
Make it PEHRSonal: Perspectives on Endometrial Hyperplasia Risk and Screening among Trans Men and Non-Binary People
Main applicant: Alison Berner (BCI/QMUL)
Co-applicant: Martin Widschwendter (UCL), Steward O’Callaghan (OUTpatients LGBTIQ+ Cancer Charity), Dean Connolly (KCL)
It has been proposed that transgender men and non-binary people who were assigned female at birth (TMNB) have an increased risk of endometrial hyperplasia and cancer, due to their altered sex-steroids on gender-affirming hormone therapy (GAHT). Research to-date has been conflicting and has not addressed the underlying biology.
We will conduct two two-hour online focus groups, with the same six TMNB, aiming to co-produce a study to better understand the biology of endometrial hyperplasia and cancer in TMNB.
In sharing power and valuing experts by experience, we align to NIHR guiding principles and features for co-production to ensure the resulting research best serves the needs of TMNB.
Focus Group 1 (Aug/Sept 2024) will:
• Gauge knowledge of endometrial health
• Gather participants’ experiences of gynaecological care
• Provide education and resources on endometrial health (mutual benefit).
• Gather views on gaps in evidence
• Introduce potential research methods (e.g. biobanking, genomics, self-sampling) to address gaps, and gauge acceptability of these methods.
Information gathered in Focus Group 1 will inform a study schema for review at Focus Group 2 as part of continuing dialogue.
Focus Group 2 (Oct 2024) will:
o Review the study schema and discuss:
Barriers to participation and mitigation strategies
Opportunities for additional research questions that benefit TMNB
Areas for stakeholder consultations/further PPI
Promotion and communication of the research
o Gather reflections on participation.
The eventual study will form part of fellowship applications of Dr Berner:
– NIHR Advanced Fellowship (January 2025)
– CRUK Clinician Scientist (March 2025
Equality, Diversity and Inclusion biases amongst Early Phase Cancer Trial Participants within Experimental Cancer Medicine Centres (ECMCs) across the CRUK City of London (CoL) Centre.
Main applicant: Martin Forster (UCL)
Co-applicant: Adam Januszewski (QMUL), Debashis Sarker (KCL), Zoe Moon (KCL)
Background:
Demographic data, including the English Indices of Deprivation score (IMD), of patients recruited into early phase trials at UCLH has shown participants were
predominantly white and from more affluent areas compared to the average England cancer incidence[1][2]. Similar findings were demonstrated within a
collaboration with Barts and Kings Health Partners, creating a pan-London database of early phase trial recruitments of >1000 patients. We continue to
investigate links between socioeconomic status and reduced access to healthcare, information and education, services, travel costs and other barriers to accessing
early phase trials to identify and implement methods to expand access.
Aims:
To enrich our understanding of barriers to involvement in early phase clinical trials with patient perspectives.
Patient Reported Surveys:
We aim to develop a patient survey, using patient reported outcome (PRO) tools, to identify challenges to access to early phase cancer trials reported by patients.
The survey will be disseminated to patients undergoing standard cancer treatment at the three CoL cancer centres and patients who have screen-failed or refused
entry to trials.
Patient Engagement Events:
Results of this survey will be validated and complimented with further patient insights at a workshop followed by engagement events, located near each
participating centre to ensure diverse inclusion. Discussions will include potential interventions to increase trial access.
These events will not only strengthen links with our patient population but will specifically engage communities who feel ostracised from research and access to
early phase trials.