Conventional accountability metrics to measure the impact of health R&I process normally are not able to represent the claims of different actors. The development of a new integrated collective research impact framework will be instrumental in enabling Return Of Investment (ROI) by each involved stakeholder in a view of collective sustainability. Economic and financial dimension (efficiency) has to be integrated with measures of mission success (efficacy), while being accountable to all the stakeholders who are directly or indirectly affected by an organization activity. Starting from the Integrated Accountability Model (IAM) in its different dimensions (mission, economic and social), new and appropriate metrics to evaluate impact of health research will be developed in a multistakeholder participatory approach. The IAM model will be expanded and fine-tuned in a new Collective Research Impact Framework (CRIF) to be applied to Multi-Stakeholder Research Initiatives in the domain of BRAIN diseases. The CRIF will be based on key requirements that will be jointly developed by different actors (i.e. research organizations, industry, civil society organizations, patients organizations, policy makers, governmental institutions): 1)the science of patient input; 2)common classification system to uniformly identify types of health R&I; 3)new metrics to measure the impact of R&I on patients and society; 4)strategic research global agenda and funding models; 5)committed partnership among health R&I stakeholders to create and oversee cooperative ventures; 6)mechanism to determine the nature of health R&I funding on a national level. MULTI-ACT proposal is led by patient organizations that act as mediators between science and patients/society. Addressed Responsible Research and Innovation issues are: Public engagement, Research governance and Research impact assessment as responsible research is the one that produces an impact on people and society.

Multiple sclerosis (MS) is a chronic inflammatory and degenerative disease of the central nervous system (CNS). It constitutes the most common non-traumatic cause of neurological impairment among young and middle-aged people and represents a major healthcare burden. Our recent research strongly implicates infection by the Epstein-Barr virus (EBV) as the leading cause of MS, but detailed understanding of the mechanisms how EBV contributes to the disease, and whether targeting EBV could prevent or improve the course remain unresolved. To meet these challenges, we have established a consortium with extensive experience in neurology and MS, genetics, virology and EBV, epidemiology, immunology, clinical trials, artificial intelligence, as well as stakeholder involvement and responsible research and innovation (RRI). By combining this expertise, the consortium takes advantage of high-quality health registries, existing research cohorts of persons with MS, and prospective randomized clinical trials of antiviral therapies targeting the EBV infection in MS. The ambitious goals are to answer the questions why only a few EBV infected persons develop MS, and define the underlying mechanism of this process, as well as clarify if targeting the EBV infection can prevent MS or improve the disease course. By answering these questions, we would meet the challenges defined in the current call: Relationship between infections and non-communicable diseases. We would contribute with knowledge to reduce disease burden by providing the health care system with new knowledge to better understand the cause of MS, including host risk factors that influence the development of the disease. We would also provide a basis for new or improved tools to prevent MS or disease progression. Healthcare practitioners will gain access to knowledge to guide them on preventive measures and of those persons at risk of developing MS, with the ultimate goal of eradicating the disease.

Direct costs of brain disorders make up for 60% of the total costs – which EBC estimated at 800 bln€/year in Europe. At European level, this health budget far exceeds that of cardiovascular diseases, brain diseases and diabetes together. ALAMEDA will research, develop and exploit the next generation of personalized AI healthcare support systems that improve the rehabilitation treatment of Parkinson’s, Multiple Sclerosis, and Stroke (PMSS) patients. Stemming from very specific clinical use cases, ALAMEDA will develop user-friendly solutions that will be designed and evaluated on the principles of value-based health. The consortium brings together established medical research teams, AI researchers, medical software vendors and healthcare market experts to demonstrate AI-based personalised prediction, prevention, and intervention approach in three (3) real world pilots. Liaisons have been established with projects MULTI-ACT and IDEA-FAST and the carefully structured workplan, embodies an integrated and harmonized approach with active patients’ engagement towards meeting the ALAMEDA objectives and delivering market-relevant outcomes of significant exploitation potential.

IMPROVE will use Patient Generated Health Data (PGHD) gathered via m-health and e-health technologies to gain improved insights into the real-life behavior of, and challenges faced by, patients of all ages with complex, chronic diseases and comorbidities. Already today, a wealth of patient and citizen information is available, but fragmented, and therefore not coming to its full utility and value. These personal data will complement and improve existing approaches for Patient-Centered Outcome Measures beyond those currently available in state-of-the-art platforms. The IMPROVE platform that the consortium will build will enable the smart use of patient input and patient generated evidence to 1) advance the role of patient preference and patient experience in the context of treatment selection, 2) improve medical device design based on patient preferences and experiences, and 3) facilitate faster market entry of patient-centric and cost-effective advanced integrated care solutions. Improved clinical adoption of Value Based Health Care, and enhanced return on research and innovation investments will be demonstrated in different care settings across the EU, for 10 use cases in at least 5 different disease areas (e.g., ophthalmology, oncology, cardiovascular disease, chronic inflammation, and neurology). The use cases will be conducted using a large variety of implementation strategies, building on a design thinking approach, to optimally test the innovative framework of data gathering and translation into controlled change and action. In addition, a significant contribution from implementation science is planned to reach out to all stakeholders that are relevant for this initiative and maximise the impact to IMPROVE healthcare provision.

The main objective of the Project is to create BEAMER, a disease-agnostic behavioral and adherence model for improving quality, health outcomes and cost-effectiveness of healthcare, through improving the quality of life of individuals, enhance healthcare accessibility and sustainability. The model will allow for tailoring to individual?s needs, using Real World Data captured from patients? behaviors and health system information, transforming the way healthcare stakeholders engage with patients to optimize understanding of their condition and adherence levels throughout their patient journey. BEAMER is driven by a set of Ontology, Epistemology and Methodology principles, supported by Artificial Intelligence, Natural Language Processing, and Machine Learning. BEAMER will optimize the disease-agnostic adherence model by real-life testing proof-of-concept in 18 different pilots in Norway, Spain, the Netherlands, Germany, Portugal, and Italy, including over 18,000 patients (3000 patients in each thematic area). BEAMER will be embodied in an open source European searchable database, continuously updated, validated and optimized by empirical evidence and new insights, available to all stakeholders and adaptable for future developments in healthcare. Finally, extensive efforts will be directed to develop and implement dissemination and communication activities that increase exploitation and sustainability of BEAMER.