The VOICE course has, for over a decade, been educating cancer patients in the basic principles of the science of cancer, in order that they can become more confident when acting as advocates for cancer patients on grant committees, pharmaceutical advisory panels and government policy groups and the patient voice within research.

This residential course takes up to 20 people per year at the Barts Cancer Institute (BCI). Through a combination of lectures and laboratory practicals, we provide a very compact training experience that is 40% academic teaching, and 60% question and answer after each seminar. It is highly interactive and extremely successful. This is evidenced by almost every Cancer Research UK Grand Challenge Teams having VOICE-trained PPIE members, encounters with VOICE students from the first 3-4 years at conferences who are still active as advocates, and the constant refrain from some original students of “I still use the notes from VOICE”.

The limitation of VOICE is its size and the limited number of BAME groups who attend. Firstly, we cannot reach enough potential advocates as we do not have the capacity. Secondly, we can potentially address the EDI issue. During COVID we ran a live online VOICE course combining live seminars with Q&A and some recorded seminars. Half of the attendees were black or Asian. While this may have been a coincidence, it is possible that for cultural reasons, potential advocates from such underrepresented groups are unable to attend a residential week but could attend an online event.

Therefore, we want to develop a digital version of our course that Independent Cancer Patients’ Voice (ICPV) can distribute to PPI groups anywhere. The tutors would then support attendees with live Q&A to offer more personal support and guidance. The digital resource could be shared with many potential advocates and serve as an advert for our residential week.

We will aim to engage with members of the public (primarily cancer patients and their carers) to help raise awareness about hyperthermia (“thermotherapy”) as a cancer treatment in combination with standard treatments such as radiotherapy and systemic treatments. As Guy’s Hospital is currently the only centre in the UK to have a superficial hyperthermia machine, most of the UK population is not aware that this treatment is an option. In addition, we hope to recruit more PPIE members to our current ongoing real-world ThermoRad study and for future clinical studies involving hyperthermia treatment.

PPIE recruitment will involve advertising through patient organisation networks (i.e., SELCA, GSTT membership). Additionally, patients who have received this treatment in the past have expressed interest.

With the help of our PPIE members, we will:

1. Create an updated patient leaflet for hyperthermia treatment;
2. Plan an open day at Guy’s Cancer Centre;
3. Host the open day involving:
   1. Presentations by clinicians and radiographers involving in hyperthermia treatment as well as past patients explaining the treatment and what to expect;
   2. A closed door PPIE session to plan further engagement activities and to discuss a potential future randomised study involving hyperthermia.

We will tailor the open day based on the prior discussions we will have with our PPIE members.

With consent, we will document the open day with photography, which may be used to advertise for future PPIE events. We will also have a sign-up sheet to express interest in joining our PPIE group to help with the ongoing ThermoRad study and future clinical studies.

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.

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.

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

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.

[1] – Sridhar A, Chavda S, Hsu H, Renshaw H, Fernandes T, Maciter C, Asher S, Rabin N, Sive J, Kyriakou C, Papanikolaou X, Xu K, Wechalekar A, Mahmood S, Mcmillan A, Lee L, Yong K, Dekaj F, Popat R. PB2091: Disparities In Enrolment Into Multiple Myeloma Clinical Trials By Socioeconomic Deprivation. Hemasphere. 2023 Aug 8;7(Suppl):e8120972. doi: 10.1097/01.HS9.0000975156.81209.72. PMCID: PMC10429521.

[2] – Mohd Noor A, Sarker D, Vizor S, McLennan B, Hunter S, Suder A, Moller H, Spicer JF, Papa S. Effect of patient socioeconomic status on access to early-phase cancer trials. J Clin Oncol. 2013 Jan 10;31(2):224-30. doi: 10.1200/JCO.2012.45.0999. Epub 2012 Dec 3. PMID: 23213088