The MULTI-ACT model: the path forward for participatory and anticipatory governance in health research and care

Abstract

The COVID-19 pandemic has unmasked even more clearly the need for research and care to form a unique and interdependent ecosystem, a concept which has emerged in recent years. In fact, to address urgent and unexpected missions such as “fighting all together the COVID-19 pandemic”, the importance of multi-stakeholder collaboration, mission-oriented governance and flexibility has been demonstrated with great efficacy. This calls for a policy integration strategy and implementation of responsible research and innovation principles in health, promoting an effective cooperation between science and society towards a shared mission. This article describes the MULTI-ACT framework and discusses how its innovative approach, encompassing governance criteria, patient engagement and multidisciplinary impact assessment, represents a holistic management model for structuring responsible research and innovation participatory governance in brain conditions research.

Collective health research assessment: developing a tool to measure the impact of multistakeholder research initiatives

“…The development of the MSC was guided by the strategic intent of responsible research and key building principles of the CRIF: (i) participatory governance, (ii) effective and inclusive stakeholder engagement, (iii) shared mission and agenda, and (iv) collective measurement for the bottom-up evaluation of health research impacts that advance collaboration between science and society and integrate scientific excellence into patients’ needs and social responsibility [ 26 ]. To develop a formal tool for assessing the impact of health research, we focused on impacts rather than performance per se, as it is impact that makes research transformative.…”

“…The MSC has the potential to accomplish this task because it contains over 100 indicators from different dimensions for multiple accountability purposes that are important both in RRI (excellence, economic, social) and for monitoring PROs and the shared mission (efficacy) to enhance mission-oriented multistakeholder health research [ 34 , 35 ]. Second, by describing how MSC can be used, this article complements the recent study by Zaratin et al [ 26 ] that introduces the CRIF and its holistic management model for fostering RRI in brain research. By going into one element of this framework in more detail, this study focused on the MSC development process, the multistakeholder nature of which is consistent with RRI.…”

“…A considerable number of studies have focused on developing frameworks for implementing RRI (see e.g. [ 17 , 23 , 24 ]), but tools are lacking for assessing whether and how research and innovations actually follow RRI principles in line with the needs of society [ 25 ], or placing the patient perspective at the core of the impact assessment [ 26 ].…”

“…Instead of single measures determined by individual organizations, tackling the needs of patients and society requires collective action and a shared mission defined by all the relevant stakeholders of health research. This innovative co-accountability strategy aims to promote participatory and anticipatory governance in health research (see [ 26 ]) and to respond to the different demands of stakeholders by enabling the alignment of a plurality of interests in a shared mission.…”

“…To be able to solve “grand challenges” such as environmental or social sustainability, demographic change or complex health problems, RRI requires a direction that enables mission-oriented and multistakeholder governance models as these ensure cooperation and the pursuit of a long-term return on investment that is not only economic (e.g. [ 26 – 28 ]). In this respect, one of the innovations of CRIF is that it considers mission orientation to be an explicit driver of accountability and introduces the first accountability dimension (efficacy), defined as the capacity of a research initiative to fulfil the shared mission.…”