Research and overview of relevant risk factors, data sources, and implementation/scaling potential
Summary
The aims of this work package is to provide both a knowledge-based foundation to WP8, even linking up to other WPs, and a baseline for the tasks and testing in the WP. This task will host also the development of a framework for the assessment of monitoring tools in different areas based on the Model for ASsessment of Telemedicine (MAST), evaluating possible extents of implementation, transferability, standards.
Definitions of monitoring relevant terms and agreement of lists of risk factors, risk markers and health determinants and identification of relevant stakeholders and citizen target groups
The objectives of this sub-task include desk research on the validated information from EU and beyond to identify and describe known risk factors and health determinants relevant across cancer and other NCDs. This also comprises the weighting of the risk factors and health determinants according to diagnosis and patient numbers in Europe.
Mapping of available clinical data, registries, surveys and technologies as well as existing monitoring practices per country
The aim is to for the participating countries to identify which data, tools and practices for collecting relevant monitoring information are available. These include, among others: (i) Current data from sources such as population-based registries and surveillance systems, administrative databases, electronic patient records; (ii) Citizen generated data collected from tools such as interviews, questionnaires (both physical and digital), wearables, smartphone apps and data donation platforms; (iii) Biological data from blood samples, saliva, spinal fluids (both biochemical markers and genetic information).
Risk factors, markers and health determinants matched with available data and methods to explore possibilities for monitoring
The main objective is to evaluate, within the overall legal, ethical and security framework of the different countries, identified tools and methods for collecting data about each considered risk factor and health determinant. Each country will have different possibilities for collecting data as well as different interests.
Identifying and describing standards and framework for collecting, linking and selecting monitoring data as well as legal and ethical issues associated with monitoring in compliance with the EU GDPR
This sub-task includes defining common standards and framework for collecting, linking and presenting monitoring data. This comes with the objective of helping Member States to scale the different methods in a sustainable and comparable manner. Guidelines and restrictions for data management and handling of sensitive information in the framework of the EU GDPR will be addressed.
Development of a Monitoring Assessment Tool
In this sub-task, a Monitoring Assessment Tool is proposed, adapting the MAST method developed in the Region of Southern Denmark and widely used in European countries. The MAST contains elements such as Health issues and the characteristics of the problem, Safety, Clinical effectiveness, Patient perspectives, Economic aspects, Organizational aspects as well as Socio-cultural, ethical and legal aspects.