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Table 1 The MULTI-ACT patient engagement guidelines: recommendations to the EC

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

To require brain health research promoters to conduct their R&I with a multi-stakeholder and co-accountable approach by engaging patients in their research agendas towards RRI

To provide adequate funding to support the patient engagement strategy in brain R&I projects

To encourage researchers working with patient organizations to enable the transition from individual to collective patients’ experiential knowledge

To recommend the use of metrics to evaluate the performance and effectiveness of patient engagement in research