TANGELED: No fairy tale for cancer care.
Patient involvement and empowerment, multidisciplinary healthcare professional teams, access to quality treatments and care services, value in healthcare, patient relevant outcomes, data collection, standardisation and interoperability and of course, silos – these were the buzzwords of this afternoon’s session on improving quality of cancer care.
But as always in the European Health Forum Gastein, behind these buzzwords, there are patients. And this patient view was at the forefront of the Forum discussion, with passionate interventions from the audience on an issue where personal experiences are all too frequent.
While listening to the ‘spaghetti bowl’ of issues tangled with one another: where value does not exist without patient outcomes, patient outcomes don’t exist without enhanced patient participation and quality data, and without data, we cannot measure the extent of the problems and improve cancer care, there was agreement on the need for cooperation. This cooperation should be led by a multi-stakeholder vision which provides imperative for policymakers and integrates patient perspectives into decision-making across the care continuum. However, one statement just didn’t add up.
The EFPIA perspective was presented by Vincent Clay from Pfizer, who gave an excellent presentation which started by mapping the fragmented data landscape in cancer across Europe, its underlining problems and possible solutions. Regrettably, in the end EFPIA stuck to the usual narrative – all efforts ultimately leading to the fairy-tale-land of outcomes/value-based pricing. The question is though, aren’t we getting ahead of ourselves here?
As mentioned consistently throughout this year’s forum, we do not have quality data from randomised trials at the time of approval and both health technology assessment (HTA) and pricing & reimbursement decisions are often based on surrogate endpoints and incomplete data files. And then there’s always the argument of frequent underperformance of the treatment in the real-life setting.
I do not oppose the idea of paying for value, and in an ideal world with quality data and comparative trials it would seem logical, however, there is no universal definition of value and under the current system it seems like value can easily translate to ‘whatever maximum profit margin we [pharma] think we can add up’.
So here’s some food for thought, outcomes/value-based pricing: Is it feasible? Is it sustainable? What are the alternatives? I would personally go with increased transparency in pricing, at the very least to start understanding what exactly we [taxpayers] are paying for and how much.
This Blog was written by the Young Gasteiner Anna Prokupkova