Personalised cancer research
Beyond finding common ground: Collaborative learning of stakeholders in cancer genomics
Cancer research is generally organised in consultation between doctors, scientists and pharmaceutical companies. Strange, for at the end of the day it revolves around the patients. This project is aimed at improving dialogue between the parties involved. During speed dates, patients were given an opportunity to tell their story. Together with doctors and researchers, they discussed whether specific patient issues were clinically relevant, new and researchable.
First, in a preparatory session, patients were supported in linking their personal story to research. After all, they are the experts of their own body and own situation. It became clear during one of the speed dates, for example, that patients experience significant side-effects from a shortage of vitamin B12, something which is often overlooked by doctors or for which there is insufficient ‘evidence’. Researchers said that it may be possible to investigate problem in cohort studies – something that had not been done to date.
The project is being carried out in cooperation with the Netherlands Federation of Cancer Patients (NFK), who will use the results in negotiations with the pharmaceutical industry, the Dutch Cancer Foundation (KWF) and university scientists for future research. Also, the results will be discussed during the public event, Cancer Genomics Market Plaza, at the end of March 2009. Ultimately, the project should give insight into the success factors that strengthen the dialogue between researchers and patients, thereby increasing the relevance of research to patients.