Patient organisations aim for greater collaboration

In April, delegates at the European Cancer Patient Coalition summit in Brussels heard from several formidable speakers on measures that need to be taken to tackle inequalities within and between European countries on cancer detection, diagnosis and treatment. One specific goal of the meeting was to identify ways of sharing available best practice and encouraging more research across EU member states. But just how much of a role do patient organisations have in directing research priorities? The short answer seems to be an ever-increasing one. EUROCAN – a scheme set up in 2005 to map national cancer initiatives, identify areas for collaboration and establish future research priorities – has identified a specific need for patient involvement. The project’s aim is to encourage closer cooperation of EU in determining cancer research strategies. In a report published earlier this year on the feasibility of bringing national cancer strategies together the project concluded it was ‘‘essential to include the patients’ voice in the establishment of priority areas in cancer research’’. It is a position reiterated by Dr. Janez Potocnik, European Commissioner for Science at the ECPC summit who said the response from EU member states to the proposals were so far ‘‘encouraging’’. Hildrun Sundseth, head of EU policy at the ECPC said the prominence of patient groups in cancer research policy was ‘‘slowly improving’’ although too many organisations still only pay ‘‘lip service’’ to patient groups. ‘‘First of all patient groups had to prove that they were serious stakeholders,’’ she said. ‘‘In the past researchers have been approaching patient groups at the very last moment when most of the project has already developed, almost as an afterthought or because it was a funding requirement.’’ ‘‘This is changing now and we are increasingly consulted and considered as partners.’’ This assertion is perhaps underlined by the speakers organisers of the ECPC summit were able to attract, including Professor Tanja Cufer, EORTC Board Member who also talked about a new model of collaboration between industry,