A prospective and participatory approach towards 'responsible' health research and innovation

Purpose - Non-publication of health research data results has serious negative impacts on people's lives. Ben Goldacre diagnoses and popularizes in "Bad Science" (2008) and "Bad Pharma" (2013) a vital "systemic failure" with many stakeholders and counterproductive practices involved so that information about randomized controlled trials (RCTs) are not put in the public domain to the extent that drug innovation is sufficiently effective. This paper presents a conceptual framework for understanding and supporting transformative knowledge-based change aimed at overcoming publication bias in clinical trials guided by the concept of 'Responsible Research and Innovation' (RRI). Design/methodology/approach - When faced with high levels of uncertainty and complexity regarding future, scenario-based foresight offers itself as a promising system of inquiry. A 'system foresight' approach (Andreescu 2013) is based on the assumption that, firstly, inquiring into the future provides freedom to distance oneself sufficiently from the present; secondly, the future should be approached systemically; and thirdly, the processes whereby the future is explored should be participatory, i.e. as inclusive as possible. Originality/value - The proposed methodology puts in evidence that in areas where complex decisions involving the coordination and the commitment of many different institutional systems and (large) organizations are at stake for transformative change, a strong prospective and participatory component is needed in order to provide a robust framework for 'responsible' governance of research and innovation. Practical implications - The conceptual framework proposed was empirically applied as a structured stakeholder-based prototyping process within the context of the EU-funded project "UNCOVER". A value-based vision was laid out, together with procedural arrangements of feasible measures leading to pathways towards responsible future research and innovation in the realm of clinical trials.