DAY 1 | 30 November 2021 | 15:30 CET (GMT +01:00)
Session prepared with SITRA, Finland
📝 Session abstract
In a fair data economy, the interests of individuals, companies and society are in balance. Fairness means that the rights of individuals are protected, and that services and data-based products are created in an ethical manner.
Sitra has created six fair data economy principles. The session will introduce, discuss, and concentrate on the principles, namely: (1) a trustworthy ecosystem; (2) effective access to the data; (3) human-centricity; (4) innovation where everyone gets value; (5) culture of experimentation; (6) sharing of data at the core. It will be illustrated with examples from health, health services and industry, and the advancements in using person-generated health data to streamline healthcare process and assess value-based health care.
In the future, citizens will generate exponentially more data than health and care professionals and systems. Our personal data will have a tremendous impact on our health, data sharing, and health and care systems. We need better rules and policies based on European values. In this session we will focus on citizen-generated data and introduce a vision for a person-centric health data sharing.
🕐 Session Programme
► 15:30 CET Session introduction: A vision for a person-centric health data sharing
Saara Malkamäki, Sitra, Finland
This session will describe the benefits of a person-centric health data sharing for citizens and patients as well as health systems. It will focus on the requirements to make a person-centric vision come true and detail the promises for better prevention, individual care and follow-up. In the vision fairness means that the rights of individuals are protected, and the needs of all stakeholders are considered. Interests of individuals, companies and society are in balance.
► 15:38 CET How the six principles of fair data economy support person-centric health data sharing and empower individuals
Markus Kalliola, Sitra, Finland
This session focuses on the six principles of fair data economy and describes the existing challenges in health data ecosystems. It will also introduce elements related to ecosystem data governance.
► 15:45 CET How can health services enable person-centric health data sharing?
Dipak Kalra, i-HD, United Kingdom
Patients have huge potential to contribute data which they collect as part of the self-management of health conditions, whether typed into apps or collected automatically through wearable sensors. Of particular importance is the opportunity for patients to contribute health outcomes (PROMs) and experiences (PREMs), which are rather poorly collected at present. The IMI H2O project aims to establish a network to collect health outcomes from patients across Europe, with consent, to help improve those outcomes for individual patients in collaboration with their clinical teams, and to scale up outcomes-based research and value-based care at national and European levels.
► 15:55 CET Good practices in person-centric health data sharing
Mariana Meira, SPMS, Portugal
Cátia Pinto, SPMS, Portugal
Thomas Grandell, Etsimo Healthcare Oy, Finland
To illustrate the principles and foundations for person-centric health data sharing, two good practices will be presented:
Portugal: App SNS 24 gathers citizen's health information in an application residing on their smartphone. Through the application, citizens can access a wide range of health information, including their vaccine card, allergies, prescriptions, and treatment guides. Following services are made available: 1) teleconsultation, 2) renewal of medication and 3) storage of health measurements such as blood pressure or body mass index. In addition to citizens bringing their own information and transmitting them to health professionals, developers can design different cards and receive approval from the public market for person-centred digital health applications.
Finland Etsimo is a Finnish healthcare platform that leverages AI and machine learning on top of health data, enabling engaging experience, and predictive and preventive healthcare. The goal is to nudge the customer’s behaviour towards a healthier lifestyle, delaying or preventing the onset of chronic disease. Consumer’s lifespan can be predicted by combining consumer’s health data with their lifestyle data. The need to treat sick people can be reduced and focus can instead be on keeping people healthy by enabling services for predictive interventions.
Dipak Kalra, i-HD, United Kingdom
Cátia Pinto, SPMS, Portugal
Thomas Grandell, Etsimo Healthcare Oy, Finland
Mariano Votta, Active Citizenship Network, Italy
