Periodic Reporting for period 1 - ExACT (European network staff eXchange for integrAting precision health in the health Care sysTems)
Periodo di rendicontazione: 2019-03-01 al 2022-08-31
The “European network staff eXchange for integrAting precision health in the health Care sysTems” consortium (ExACT), is aimed at building a community of academic and non-academic institutions that generates high quality, multidisciplinary collaboration by exchanging knowledge in research and training activities on precision health.
Precision health aims to prevent and predict illness, maintaining health and quality of life for as long as possible, by drawing on the new technological and data science tools to translate volumes of research and clinical data into information that citizens, patients and doctors can use.The implementation of precision health remains contingent on significant data acquisition and timely analysis to determine the most appropriate basis on which to tailor health optimization for individual in the prevention, diagnosis, and disease treatment. Achieving effective and proportionate governance of health-related data will be essential for the future health care systems
The ExACT network sees five main challenges that EU health systems must address: the integration of Big Data and digital solutions in healthcare to overcome the fragmentation of data and generate the required knowledge and infrastructure to support such approaches; a proper engagement, awareness and education of citizens to become active managers of their own health; an urgent need to educate physicians and other healthcare professionals to gain the necessary knowledge in life and digital technologies, and to become new leaders that might lead shape, change the culture and catalyse the unavoidable change in the organisation of health services ; the regular adoption of HTA as the tool to support evidence-based integration of the omics based technologies into the health care systems; the discussion around the ethical, organisational, social, legal, and policy issues that this new paradigm brings.
Precision health aims to prevent and predict illness, maintaining health and quality of life for as long as possible, by drawing on the new technological and data science tools to translate volumes of research and clinical data into information that citizens, patients and doctors can use.The implementation of precision health remains contingent on significant data acquisition and timely analysis to determine the most appropriate basis on which to tailor health optimization for individual in the prevention, diagnosis, and disease treatment. Achieving effective and proportionate governance of health-related data will be essential for the future health care systems
The ExACT network sees five main challenges that EU health systems must address: the integration of Big Data and digital solutions in healthcare to overcome the fragmentation of data and generate the required knowledge and infrastructure to support such approaches; a proper engagement, awareness and education of citizens to become active managers of their own health; an urgent need to educate physicians and other healthcare professionals to gain the necessary knowledge in life and digital technologies, and to become new leaders that might lead shape, change the culture and catalyse the unavoidable change in the organisation of health services ; the regular adoption of HTA as the tool to support evidence-based integration of the omics based technologies into the health care systems; the discussion around the ethical, organisational, social, legal, and policy issues that this new paradigm brings.
WP 1 - Define the framework for the integration of Big Data and digital solutions into the health care systems.
WP1 consists of 4 tasks related to the definition of a framework for the integration of data (big data) and digital solutions into the health care systems.
The secondees worked on:
- the identification of public real-world data to guide the interpretation of laboratory results and to find the best methods to extract the found data into a processable form.
- the APACHE project, which aims to assess patients experience on using portable monitoring systems during multimodal oncological therapies
Moreover, new fields of research emerged during the project, in particular the need to study and understand the potential of polygenic risk score as an additional health data and to develop methods to integrate different sources of health data to analyse the infection rate of COVID-19.
WP2 - Design and promote innovative citizen engagement models. (EUPHA)
Task 2.1 To summarise the existing programmes of active citizen engagement in precision health programs in EU (EUPHA)
The objectives of the task are to map on-going initiatives programmes in the European Union (EU) and to identify the key elements of innovative models of citizen engagement and the related key performance indicators (KPIs). To date the results of WP2 are published in the following paper:
- BMJ Open. 2021 Jul 9;11(7):e045846.
WP3 - Identify and implement effective models for healthcare professionals education and leadership in precision health
The scientific activity focused on establishing a methodology to investigate effective models for healthcare professionals’ education and leadership in precision health. In this regard a preliminary search was conducted to define the state of the art, possible gaps and bottlenecks on this topic. A systematic review is now ongoing. These tasks will be followed by Task 3.3. To identify the most effective and efficient methods for educational training.
WP4 - Foster the adoption of the Health Technology Assessment approach for the “omics” technologies in EU Member States
WP4 consists of 3 tasks related to the adoption of the HTA approach for the “omics” technologies in EU Member States.
An extensive systematic review of the literature was performed in order to identify the existing HTA frameworks used for the evaluation of the omics-based technologies.
The work of this task was published on Int. J. Environ. Res doi:10.3390/ijerph17218001
WP5 - Ethical-legal and policy issues surrounding precision health
WP5 consists of 3 tasks related to Ethical-legal and policy issues surrounding precision health.
The work of this WP was published on J Med Internet Res doi: 10.2196/19129
Moreover, VUMC and UCSC developed a survey to gather the views of citizens in European Union member states on personalized medicine.
http://www.exactproject.net/site/index.php/news-events/129-survey-personalized-medicine
WP1 consists of 4 tasks related to the definition of a framework for the integration of data (big data) and digital solutions into the health care systems.
The secondees worked on:
- the identification of public real-world data to guide the interpretation of laboratory results and to find the best methods to extract the found data into a processable form.
- the APACHE project, which aims to assess patients experience on using portable monitoring systems during multimodal oncological therapies
Moreover, new fields of research emerged during the project, in particular the need to study and understand the potential of polygenic risk score as an additional health data and to develop methods to integrate different sources of health data to analyse the infection rate of COVID-19.
WP2 - Design and promote innovative citizen engagement models. (EUPHA)
Task 2.1 To summarise the existing programmes of active citizen engagement in precision health programs in EU (EUPHA)
The objectives of the task are to map on-going initiatives programmes in the European Union (EU) and to identify the key elements of innovative models of citizen engagement and the related key performance indicators (KPIs). To date the results of WP2 are published in the following paper:
- BMJ Open. 2021 Jul 9;11(7):e045846.
WP3 - Identify and implement effective models for healthcare professionals education and leadership in precision health
The scientific activity focused on establishing a methodology to investigate effective models for healthcare professionals’ education and leadership in precision health. In this regard a preliminary search was conducted to define the state of the art, possible gaps and bottlenecks on this topic. A systematic review is now ongoing. These tasks will be followed by Task 3.3. To identify the most effective and efficient methods for educational training.
WP4 - Foster the adoption of the Health Technology Assessment approach for the “omics” technologies in EU Member States
WP4 consists of 3 tasks related to the adoption of the HTA approach for the “omics” technologies in EU Member States.
An extensive systematic review of the literature was performed in order to identify the existing HTA frameworks used for the evaluation of the omics-based technologies.
The work of this task was published on Int. J. Environ. Res doi:10.3390/ijerph17218001
WP5 - Ethical-legal and policy issues surrounding precision health
WP5 consists of 3 tasks related to Ethical-legal and policy issues surrounding precision health.
The work of this WP was published on J Med Internet Res doi: 10.2196/19129
Moreover, VUMC and UCSC developed a survey to gather the views of citizens in European Union member states on personalized medicine.
http://www.exactproject.net/site/index.php/news-events/129-survey-personalized-medicine
Biomedical and digital science and technologies have a great potential to improve healthcare and underpin more efficient and sustainable health systems. Precision health aims to prevent and predict illness, maintaining health and quality of life for as long as possible, by drawing on the new technological and data science tools to translate volumes of research and clinical data into information that citizens, patients and doctors can use. Besides the exception of a unique initiative in precision health from the Stanford University in the US, there is no similar approach currently adopted at EU level .The implementation of precision health remains contingent on significant data acquisition and timely analysis to determine the most appropriate basis on which to tailor health optimization for individual in the prevention, diagnosis, and disease treatment.
Technological advances, however, jointly with the current demographic trends, and the expectation of citizens, are suspected to act to widen the gap between available resources and the requirements for health care. As highlighted by the European Steering Group on Sustainable Healthcare, sustainable healthcare requires a shift from treatment of established disease to disease prevention and early diagnosis, and it relies on the need to engage citizens to take greater responsibility for their health in order to establish a more participatory healthcare model (2).
In order to keep health care sustainable, four elements appear to be a consistent feature of all reports that seek to address these issues: placing the individual citizen at the centre of health systems; increasing the emphasis on prevention; a radical reorganization of services in which care are integrated (hospital and community care work together); and a systematic evaluation of the new and existing technologies using the Health Technology Assessment (HTA) and Health Outcomes Research approaches to invest or procure based on real value.
By training a new generation of health care professionals, managers, digital health developers, healthcare finance professionals at the different levels among relevant EU and international partner institutions, we will exchange and harmonize the actual knowledge and practice in order to establish precision health across EU health systems.
The relevance of investing in a network that will stimulate the implementation of a path towards precision health is large and it brings a fundamental shift in our view of medicine.
Technological advances, however, jointly with the current demographic trends, and the expectation of citizens, are suspected to act to widen the gap between available resources and the requirements for health care. As highlighted by the European Steering Group on Sustainable Healthcare, sustainable healthcare requires a shift from treatment of established disease to disease prevention and early diagnosis, and it relies on the need to engage citizens to take greater responsibility for their health in order to establish a more participatory healthcare model (2).
In order to keep health care sustainable, four elements appear to be a consistent feature of all reports that seek to address these issues: placing the individual citizen at the centre of health systems; increasing the emphasis on prevention; a radical reorganization of services in which care are integrated (hospital and community care work together); and a systematic evaluation of the new and existing technologies using the Health Technology Assessment (HTA) and Health Outcomes Research approaches to invest or procure based on real value.
By training a new generation of health care professionals, managers, digital health developers, healthcare finance professionals at the different levels among relevant EU and international partner institutions, we will exchange and harmonize the actual knowledge and practice in order to establish precision health across EU health systems.
The relevance of investing in a network that will stimulate the implementation of a path towards precision health is large and it brings a fundamental shift in our view of medicine.