75 Addressing the lung cancer research agenda through user partnership working: the Stepping Stones experience

Abstract

Introduction: Compared to other tumour types, lung cancer research has enjoyed only modest improvements in survival over the past 30 years. In the current economic climate grant acquisition has become more challenging as funding bodies find it necessary to review their funding strategies. Furthermore, fundraisers may favour supporting local rather than national charities since they feel a greater ownership and more personal feedback for their endeavours. We share the experience of a local charitable research group which has become a major funder in Wales through partnership working with the statutory sector. Method: The Stepping Stones Research Fund based in Velindre Hospital Cardiff was launched at the beginning of 2009 to fund lung cancer research within South East Wales. Known active fundraisers and interested stakeholders were invited to a meeting where their aspirations for lung cancer research were discussed. These discussions were framed within a presentation outlining the current research expertise within Wales, estimated costs of funding different projects and potential strategies for long term research including investment in future researchers. Results: Participants identified three key areas of research to be addressed: investment in basic science through the Wales cancer bank, clinical trials support and exploring the patient and carer experience. The first major fundraising event involving 15 former Welsh rugby captains climbing Kilimanjaro raised £320k. To date, three major are funded: • Five year collection of lung cancer and mesothelioma samples for the Wales Cancer Bank • QUALFRAG: a qualitative sub study of FRAGMATIC • SKOPOS: a phase II study to assess the safety and immunological activity of TroVax ® plus pemextrexed/cisplatin in patients with malignant pleural mesothelioma (MPM). Conclusions: The Stepping Stones fund demonstrates that through appropriate engagement with fundraisers, industry and the media the funding of substantial local research projects is possible. This is augmented by true partnership working, shared goals and ownership with direct and personal feedback to identify the difference that fundraising has achieved.