Awe and anxiety for cancer cells: connecting scientists and patients in a holistic approach of metastasis research.

ABSTRACT

BACKGROUND: Metastatic cancer is often experienced by patients as a death sentence. At the same time, translational scientists approach metastasis also as an interesting phenomenon that they try to understand and prevent. These two sides of the same coin do not mask the considerable gap that exists between the laboratory world of scientists and the life world of patients. Funding agencies nowadays increasingly demand researchers to be responsive to the values and priorities of patients and public. One approach to bridge this gap and to increase the impact of science is patient and public involvement (PPI). A concise literature review of PPI research and practice in this paper revealed that although PPI is often deployed in translational health care research, its methodology is not settled, it is not sufficiently emancipatory, and its implementation in basic and translational science is lagging behind. Here, we illustrate the practical implementation of PPI in basic and translational science, namely in the context of HOUDINI, a multidisciplinary network with the ultimate goal to improve the management of metastatic disease. METHODS: This paper reports on a societal workshop that was organized to launch the holistic PPI approach of HOUDINI. During this workshop, societal partners, patients, and physicians discussed societal issues regarding cancer metastasis, and contributed to prioritization of research objectives for HOUDINI. In a later stage, the workshop results were discussed with scientists from the network to critically review its research strategy and objectives. RESULTS: Workshop participants chose the development of metastasis prediction tools, effective therapies which preserve good quality of life, and non-invasive tissue sampling methods as most important research objectives for HOUDINI. Importantly, during the discussions, mutual understanding about issues like economic feasibility of novel therapies, patient anxiety for metastases, and clear communication between stakeholders was further increased. CONCLUSIONS: In conclusion, the PPI workshop delivered valuable early-stage input and connections for HOUDINI, and may serve as example for similar basic and translational research projects.

Metastatic cancer is an aggravated form of cancer, that patients are afraid of. At the same time, cancer researchers are fascinated by this disease. Therefore, there is an apparent gap between how patients and researchers feel about cancer. If researchers wish to be most helpful to cancer patients, it is important to consult the patients and ask what they need and find important. This is also stimulated by agencies that financially support research projects. A possible way to do this is Patient and Public Involvement (PPI), in which not only scientists, but also patients and lay people are asked to provide input. It appears, however, that PPI is scarcely applied in basic science. In this article, we describe how a collaborative network of basic and translational cancer researchers, HOUDINI, intends to include the patients' voice throughout the research progress and actively asked for input from patients, societal partners and physicians at the start of their project. These people discussed what themes they found most important to be researched by HOUDINI. Later, the HOUDINI researchers reflected on this. This example shows how PPI can be applied and how HOUDINI received valuable input for their research goals.