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  • Multi-act Taxonomy v7A Multi-act project taxonomy for Health RRI and Collective Research Impact Assessment
    • Multi-stakeholder Responsible Research and Innovation.
      • Collective Research Impact FrameworkCollective Research Impact Framework (CRIF) conceptual framework that MULTI-ACT is developing to enable a new collective accountability approach to multi-stakeholder R&I initiatives in the field of brain diseases
        • EconomicEconomic refers to the assessment of the long-term economic sustainability of health R&I
        • EfficacyEfficacy refers to the capacity of a given initiative or programme to achieve its mission, whereas the term mission entails all the strategic priorities settled via the stakeholder engagement process.
        • ExcellenceExcellence concerns the quality of research data and findings in health research. Only excellent research will have a positive impact on people and society.
        • Patient ReportedPatient-reported concerns patients as key stakeholder, whose needs, information and perspectives must be understood and incorporated into the process of health research impact evaluation. Thus, it works as an overarching dimension in which the other four dimensions should be rooted
      • CRIF Accountability Steps.
        • Co-selection of indicatorsCo-selected indicators must represent multi-stakeholder perspectives along the five dimensions of the CRIF.
        • Development of conceptual frameworkThe conceptual framework of the issues at stake has to be agreed upon. No single stakeholder has the right to prioritize his own goals.
        • Establishment of scope and mapping of stakeholdersNo single stakeholder has the legitimacy to decide who is (or is not) a stakeholder. The following three sub-steps need to be applied, in a deliberative manner, in scoping and mapping stakeholders.
        • Measurement of indicatorsSystems for data collection, measurement and description of co-selected (quantitative and qualitative) inputs, outputs, outcomes and further impact indicators.
        • Reporting, monitoring and assessmentPutting targets into action, visualization and use of the results, setting and executing an assessment plan.
      • Disease.
        • Diseases of the nervous system (ICD11)The International Classification of Disease, Eleventh Revision (ICD-11) is a system of medical coding created by the World Health Organization (WHO) for documenting diagnoses, diseases, signs and symptoms and social circumstances
      • Governance bodiesGovernance bodies groups with specific roles within a multi-stakeholder initiative that are composed by individuals participating to the initiative itself
        • Committees and Working GroupsThe Committees and Working Groups (referred to as “WG”) can be appointed by the LB according to the specific needs of the program/project and the activities that will be carried out in order to achieve the desired change.
        • Compliance CommitteeThe Compliance Committee (referred to as “CC”) is in charge of maintaining a balance among stakeholders’ stances and expectations and oversee the ethical issues that might arise during the implementation of the initiative.
        • Leadership BoardThe Leadership Board (referred to as “LB”) is composed by representatives from the categories of stakeholders that have a strategic importance for the initiative and represents the decision-making body.
        • Stakeholder Advisory BoardThe Stakeholder Advisory Board (referred to as “SAB”) is composed by interested stakeholders and provides advices to the Leadership Board.
          • Patient Advisory Boardpatients, their families and caregivers (one of the categories of stakeholders involved) might be asked by the Leadership Board to provide their specific contribution and advice for the most crucial decision-making processes according to the specific need of the initiative. This category of stakeholders can be defined as a sub-group within the Stakeholder Advisory Board , called Patient Advisory Board (referred to as “PAB”).
      • Impactreflection of outcomes as measurements, adjusted for the effects achieved by others (alternative attribution), for effects that would have happened anyway (deadweight), for negative consequences (displacement), and for effects declining over time (drop-off).
      • Indicatorquantitative or qualitative factor or variable that provides a simple and reliable means to measure achievement, to reflect the changes connected to an intervention, or to help assess the performance of a development actor (OECD, 2010).
      • InputInput the contributions made or required by each stakeholder/organization. It can include financial, human, technical and relational resources.
      • Multi-stakeholder Initiativea governance structure that seeks to bring stakeholders together to participate in the dialogue, decision-making, and implementation of solutions to problems or goals.
      • OutcomeOutcome the change arising in the lives of beneficiaries and others.
      • OutputOutput a way of describing the activity in relation to each stakeholder's inputs in quantitative terms. Alternatively, it can be defined as the tangible and intangible products resulting from brain research and innovation
      • Patient Reported Outcomes (PROs)any report of the status of a patient's health condition that comes directly from the patient, without interpretation of the patient's response by a clinician or anyone else
      • ProcessThe research process includes all the activities that enable the research to happen (i.e. reviewing of evidence, data collection, analysis, reporting and so forth).
      • Public and Patient EngagementPublic and Patient Engagement in RRI actions to engage patients in RI processes for make them co-responsible (as sub-group of stakeholders).
      • Research.
        • Health Research & Innovation“activities of research, technological development, demonstration and innovation, including the promotion of cooperation with non-EU countries and international organisations, the dissemination and optimisation of results and mobility of researchers in the Union” within the healthcare domain. (Eur-lex, n.d.)
      • Research & Innovation Path (R&I Path)Research & Innovation Path (R&I Path) sequence of processes and activities in the R&I where patients can be engaged in order to maximize the impact of R&I. Governance Program Level and Project Development Levels are distinguished (also see: Governance Initiative):
        • Governance Program stagesGovernance Program stages in Multi-stakeholder initiative (including RFPOs) process concerned with the governance and management of research funding & performing programs
          • Breaking down the boundariesBreaking down the boundaries conditions that should be set in RFPOs in order to facilitate patient engagement as standard practice
          • Design and planningDesign and planning the design and planning of all the activities that lead to the realization of a concept or idea and which helps achieve the item's designated objective(s).
          • Evaluating researchEvaluating research activities to determine the value created by a research program or project, establishing their outputs and outcomes, the degree to which their pre-established goals were achieved, and their impact.
          • Executing researchExecuting research activities to actualize the research program or a specific research project for the purpose of achieving the item's designated objectives. Project Development Level takes places at this stage
          • Setting research prioritiesSetting research priorities actions to establish justified interest in a specific research domain to a certain higher degree, importance, precedence, or rank over others.
          • Steering institutionsSteering institutions actions performed to establish steering and advisory committees and bodies.
          • Translation to communityTranslation to community activities to foster and facilitate the uptake of results of research programs or projects
        • Project Development stagesProject Development stages in Multi-stakeholder initiative (including RFPOs) process concerned with performing single research projects
          • Conduct & operateConduct & operate project conduct & monitoring (e.g. ICT device development)
          • Design & planDesign & plan the design and planning of all the activities that lead to the realization of a concept or idea and which helps achieve the item's designated objective(s).
          • EvaluationEvaluation activities to determine the value created by a research project, establishing their outputs and outcomes, the degree to which their pre-established goals were achieved, and their impact.
          • Translation to communityTranslation to community activities to foster and facilitate the uptake of results of research projects
      • Return on Engagement (RoE)
      • Return on Investment (ROI)
      • Stakeholder“any individual or group that is affected by, who can influence or may have an interest in the outcomes of an organization’s actions”. (Freeman, 1984)
        • Care providershealth and social care organizations and professionals (doctors, nurses, etc.).
        • Industrycompanies developing and selling health products (drugs, devices, applications, etc.) and services.
        • Patientspeople with the diseases and affected by the diseases (i.e. relatives, caregivers).
        • Patients Organizationspatient associations, advocacy organizations, etc.
        • Payers and Purchaserspublic or private entities responsible for underwriting the costs of health care.
        • Policy makersEU institutions; national, regional and local policy makers.
        • Publicindividual citizens, civil society organizations and networks
        • Research and Education OrganizationResearch Organizations; Universities; Education Providers; Foundations; Other research projects

Multi-act Taxonomy v7 65 concepts

By @dutchman32