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.

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Background The need to more collaboratively measure the impact of health research and to do so from multidimensional perspectives has been acknowledged. A scorecard was developed as part of the Collective Research Impact Framework (CRIF), to engage stakeholders in the assessment of the impacts of health research and innovations. The purpose of this study was to describe the developmental process of the MULTI-ACT Master Scorecard (MSC) and how it can be used as a workable tool for collectively assessing future responsible research and innovation measures. Methods An extensive review of the health research impact literature and of multistakeholder initiatives resulted in a database of 1556 impact indicators. The MSC was then cocreated by engaging key stakeholders and conducting semi-structured interviews of experts in the field. Results The MSC consists of five accountability dimensions: excellence, efficacy, economic, social and patient-reported outcomes. The tool contains 125 potential indicators, classified into 53 impact measurement aspects that are considered the most relevant topics for multistakeholder research and innovation initiatives when assessing their impact on the basis of their mission and their stakeholders’ interests. The scorecard allows the strategic management of multistakeholder research initiatives to demonstrate their impact on people and society. The value of the tool is that it is comprehensive, customizable and easy to use. Conclusions The MSC is an example of how the views of society can be taken into account when research impacts are assessed in a more sustainable and balanced way. The engagement of patients and other stakeholders is an integral part of the CRIF, facilitating collaborative decision-making in the design of policies and research agendas. In policy making, the collective approach allows the evaluation perspective to be extended to the needs of society and towards responsible research and innovation. Multidimensionality makes research and innovations more responsive to systemic challenges, and developing more equitable and sustainable health services.

Background The need for measuring the impact of health research more collaboratively and from multi-dimensional perspectives has been acknowledged. As part of a Collective Research Impact Framework (CRIF), a scorecard was developed that will engage stakeholders in measuring the impacts of health research and innovation. The purpose of this study is to describe the developmental process of the MULTI-ACT Master Scorecard and how it can be used as a practical tool for assessing future responsible research and innovation actions collectively. Methods Based on an extensive review of the health research impact literature and multi-stakeholder initiatives, a total of 1,556 impact indicators were collected into a database. The Master Scorecard was then co-created by engaging key stakeholders and conducting semi-structured interviews with experts in the field. Results The MULTI-ACT Master Scorecard consists of five accountability dimensions: the excellence, efficacy, economic, social and patient-reported dimensions. The tool includes 126 potential indicators classified into 52 measurement aspects that are considered the most relevant topics applicable to multi-stakeholder research and innovation initiatives in assessing their impact based on their mission and stakeholders’ interests. The MULTI-ACT Master Scorecard allows the strategic management of multi-stakeholder research initiatives to demonstrate their research impact on people and society. The value of the tool is that it is comprehensive, customizable and easy to use. Conclusions The MULTI-ACT Master Scorecard is an example of how the views of society can be taken into account in assessing research impacts in a more sustainable and balanced way. The engagement of patients and other stakeholders is an integral part of the CRIF, facilitating collaborative decision-making in the design of policies and research agendas. In policy-making, the collective approach allows extending the evaluation perspective to the needs of society and toward responsible research and innovation. Multi-dimensionality fosters research and innovations to be more responsive to systemic challenges and developing more equitable and sustainable health services.

Background Patient engagement is increasingly considered to be an important element in the treatment of brain disorders to optimise outcomes for patients, society, and healthcare systems. Nonetheless, scientific research examining methodologies to engage patients with brain diseases in Research and Innovation (R&I) is scarce. Aim To review existing scientific evidence regarding the engagement of patients with brain disorders in research and innovation. Methods Studies were retrieved from several bibliographic databases (publication date between January 2016 and April 2019) with pre-specified selection criteria. Results In total, 49 articles were identified as meeting the inclusion criteria and were reviewed systematically. Results showed that there is limited evidence available on the impact and (cost-) effectiveness of patient engagement in (brain) research and innovation. Most published studies are protocols, guidelines, and discussion articles for patient engagement in health research and innovation. Overall, there exists a general consensus to engage patients in every step of the research procedure. Relevant evidence identified includes principles of engagement, definitions of stakeholder types, key considerations for planning, conducting and disseminating engaged research, potential engagement activities, and examples of promising practices. Discussion Findings are inconclusive due to methodological differences. Comparison between studies was difficult due to differences in patients, form of engagements, and total duration of engagement of patients. Experiences of patient engagement mainly concern adherence to medical treatments or participation of “expert patients” in clinical trials, but very rarely the governance of R&I according to the dictates of Responsible Research and Innovation (RRI). More structuralized, well-conducted and comparable Randomized Controlled Trials (RCTs) are needed to be able to make evidence-based recommendations on how to increase effective patient engagement in research and innovation and assess the impact and (cost)-effectiveness.