In April the European Commission (EC) announced that it is working to provide its citizens access to safe and top quality digital services in health and care.
The EC outlined three top priorities for digital transformation in healthcare:
- Citizens’ secure access to their health data, also across borders – enabling citizens to access their health data across the EU.
- Personalised medicine through shared European data infrastructure – allowing researchers and other professionals to pool resources (data, expertise, computing processing and storage capacities) across the EU.
- Citizen empowerment with digital tools for user feedback and person-centred care – using digital tools to empower people to look after their health, stimulate prevention and enable feedback and interaction between users and healthcare providers.
These issues deal with the fundamental rights of patients in accessing information, in receiving medical care, and having a harmonized communication channel with healthcare system stakeholders.
The Right to Information and Medical Care
The EC has pledged to make a Recommendation on technical specifications about how citizens’ electronic health records can be exchanged across the EU. The idea being that the cross-border accessibility of electronic health records will help citizens to access and manage their health data within the EU.
This right to information is part of an overall theme of democratizing digital healthcare. Puerto Rico-based Abartys Health Co-Founder and CEO Dolmarie Mendez told Novobrief that the biggest challenge is “having a harmonized communication channel between healthcare system stakeholders and health data access and portability to the patient.”
Abartys Health is solving the global healthcare crisis with smarter, faster care achieved by use of a unique, centralized data hub that allows medical record portability and universal patient identification.
Mendez added that “the common demoninator and the global need” lies in “giving access to clinical data and solutions for population management in a harmonized and standardized language, in a cloud based environment to entities for research, to providers to treat patients, to health carriers to manage populations, and to patients for self management, education and prevention purposes.”
In the same vein, Alain Coheur, director of European and International Affairs at the National Union of Socialist Mutual Health Funds of Belgium, was quoted in SaluDigital last October as believing that it important to “conserve our national health services,” with regards to the role of digital technology as an actor that activates fundamental rights such as “the right to information” and “the right to medical care” as key systems of social welfare.
In order to personalize diagnosis and treatment in the face of digital transformation, the EC will implement pilot projects based on ‘real world data’ (data after clinical trials, data gathered from real patients after the medicine or products are released in the market) to meet patients’ needs with medicines or therapies.
Starting with rare diseases, via the European Reference Networks, these projects will look into providing treatment for patients with such diseases, and how to help anticipate epidemics. The aim of these pilot projects will be to demonstrate the benefits of pooling resources and expertise.
One of the initial targets is to provide access to at least one million sequenced genomes in the European Union by 2022, and 14 Member States recently committed to this target.
The EC will also draw up a catalogue of common technical specifications to support secure cross-border access to genomic and other health data for research purposes.
Digital Tools and Data Protection
Digital tools such as mobile health applications or personal devices to monitor blood or sugar, will empower people to look after their health, improving disease prevention, and enabling feedback and interaction between users and healthcare providers.
The European Economic and Social Committee (EESC) also points out that the EU should address the protection of personal data related to health.
The EESC “endorses the European Commission’s efforts to make eHealth a high priority within the Digital Agenda,” and “notes that people seeking information, patients and healthcare professionals have repeatedly stressed the need for full, accurate and up-to-date information on medicinal products and for a single digital market.”
The EESC also “points out that having all this on a single portal means there is a trustworthy and in many ways easily accessible source of officially authorised information that meets disability-access criteria. This means that patients and healthcare professionals can compare any information available elsewhere with the basic authorised information.”
Data protection principles are core elements of the European Commission’s proposals. Compliance with EU data protection rules and adequate security measures are essential to achieve the goals of this communication: enabling secure access to health data across the EU, data sharing for better research and personalised healthcare and empowering patients with digital tools.
Towards the Democratization of Healthcare
If the EU wants to democratize healthcare, it needs to look to education.
The education process to understand how valuable the health and clinical data is to treat the patient based on that patient’s uniqueness and characteristics is one of the top global challenges.
According to Mendez, who is also a contributor to Entrepreneur, “The education process to understand how valuable the health and clinical data is to treat the patient based on that patient’s uniqueness and characteristics is one of the top global challenges. If the industry keeps managing the data collection only as a ‘trash can’ because of the lack of a universal technology to manage micro and macro populations, it’s almost impossible.
“The mindset has to change, and the ecosystem between provider networks and patients needs to function with universal standards, language and tangible solutions, that can be applied between the stakeholders responsible to provide healthcare services with quality.
“In order to do that we need an ecosystem capable of managing the standard languages required by the industry in general and to make that data available accordingly to every stakeholders’ needs including insurance, providers, patients, governments, etc. That’s the Abartys Health Value Proposition.”
Abartys Health is working towards democratizing this health data access that involves “clinical data portability from a centralized cloud based environment with global access to clinical entities worldwide like: hospitals, clinics, emergency rooms, private practice, pharmaceuticals, medical devices manufacturers, etc.”
“With our technology which applies ISO (healthcare standardized languages and formats), it is tangible to provide a global centralized hub, where health and clinical data from patients is available anytime,” said Mendez.
Disclosure: This article includes a client of an Espacio portfolio company.