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Multi-act Taxonomy v6A Multi-act project taxonomy for Health RRI and Collective Research Impact Assessment
- Input
  - Documents
- 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
    - SocialSocial considers the evaluation of direct and indirect effects of health research to the whole society, beyond the mission related dimension that for health R&I would typically focus on patient needs.
  - 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
  - Engagement levels.
    - Co-designStakeholders are engaged since the very beginning of the R&I processes with a decision making role, e.g. patients are asked to define a common/shared agenda and co-design research governance and sustainability
    - ConsultStakeholders are asked to provide feedback for decision-makers on their analysis and/or decisions. Stakeholders participate by being asked for advice and opinion, by expressing their views and having discussions. It does not usually include any share in decision-making. For example consulting activities, survey, interviews, establishing and maintaining relationship with stakeholders
    - InformStakeholders are informed about research priorities, activities, outcomes and impact (e.g. . patients receive information by researcher in a passive way).
    - InvolveStakeholders partnering in research design and development as co-researchers. Stakeholders are engaged in research project activities with active role by providing their perspective and data on a specific topic (e.g. gather patients perspective on functional domains the matter most to them, co-creation of PROMs for clinical trials development). However, the project is designed and initiated by the professionals and patients are not engaged in the co-design of the project as direct decision-makers.
  - 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.
    - Engagement Coordination TeamThe Engagement Coordination Team (referred to as “ECT”) is in charge of coordinating the involvement of stakeholders, including patients, relatives and caregivers, in all the operations.
    - 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”).
  - 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.
    - Programme..
    - Project..
  - Researchaaa
    - 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.)
  - 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
  - Impact
  - Indicator
  - Output
  - Outcome
  - Patient Reported Outcomes (PROs)
  - Process
  - Public and Patient Engagement
  - Research & Innovation Path (R&I Path)
    - Governance Program stages
    - Project Development stages
  - Return on Engagement (RoE)
  - Return on Investment (ROI)

Multi-act Taxonomy v6 137 concepts

By @dutchman32