Patient Perspective of Experimental Cancer Medicine (PpExCaM Survey) – a Patient-led Initiative to Understand the Views of Participating in Early-Phase Trials


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Mekala Gunaratnam1,Emma Hainsworth1,Terry Emmery2,Tim Meyer1
1University College London Cancer Institute, London, UK,2Patient participant

Abstract

Background

We set out to co-produce a project with patients to explore key issues relating to participation in early-phase cancer trials. The purpose was to meaningfully involve patients in all stages including the initial identification of areas of enquiry, survey creation and analysis of the findings. Areas of focus included attitudes towards access to genomics data within trials, data security and perceptions around the risks and benefits of participation.

Method

A panel of five patient representatives met on three occasions. Training on concepts relating to early-phase trials was provided in the first meeting and follow-up discussion was facilitated. The survey was distributed amongst a cohort of patients recruited to early-phase trials at our site. Panel members interpreted the survey results.

Results

60 copies of the survey were circulated with 48 completed and returned. 88% of respondents completely agreed with the collection of genomics data as part of a trial and 70% wanted just an overview or no information at all about how it would be used. The pattern of response regarding routinely collected data was similarly positive. All respondents stated that trial information they had been given was either very easy to understand or fairly easy to understand, with no negative responses provided. 85% reported having enough time to make a decision. Motivations for participation were divided between altruism (72%), additional monitoring (48%), and access to new treatments (93%).

Conclusion

Patients’ attitudes towards providing data and participating in early phase trials were strongly positive, providing reassurance that information was pitched correctly by the study teams. The response rate to the survey was high suggesting the added value of this level of patient involvement.