Facilitate health information sharing for the benefits of healthcare
The data protection Directive dating from 1995 is under revision. This is an opportunity for the EU to adopt data protection rules that preserve patients’ privacy while facilitating health information sharing to deliver better healthcare in a more cost efficient way. The next generation of legislation should recognise the benefits brought by innovative technologies in healthcare, be future-proof, workable and should respond to the following needs:
• Allow the health information sharing for primary usage i.e. diagnostic, treatment and follow-up purposes.
• Support business intelligence and data analytics for secondary usage i.e. public health and research purposes
• Create legal certainty for the business community by establishing clear responsibilities between data controller and data processor (as per current regime).
• Harmonise the conditions for storing and processing health information within the EU to create a level playing field between service providers operating in different countries.
Group audience:
Comments
This is certainaly not
This is certainaly not "future-proof".
What you are saying is - healthcare is open data because healthcare people wants them. Security and rights are ok - as long as they dont get in "my" way. As a consequence, health data are unsecured with massive centraslised profiling, Command & Control ineffecienes, interest-driven instead of needs-driven change, etc.
Why not do it the empowerment way - give patients concrol of data with the means for sharing in context, i.e. to answer requests but combining and virtualising data client-side?
This would give interoperability and cross-system integration a massive boost (even cross-border), rightsize security controls and allign value chains with demand-side needs.
Nobody but patients and the specific people directly involved inthe treatment need access to personal data, so why all this attempt to undermine security?
Sure it is complex, but the stakes are enormous.
Sharing health data is a must
Sharing health data is a must in near future. Get the data out of the silos and use it.
The 'Command & Control' mantra and 'undermining security FUD' is one of the reasons that we are stuck with locked-in systems. For years this fear has kept the data inaccessible.
Cross-system integration is the cause of the current mess in Healthcare, it will never work. Every year, hundreds of people die, simply because doctors could not access the right data and made mistakes based on incomplete or missing information. Harmonise the conditions for storing and processing health information within the EU is a must to create a level playing field between service providers, not only nationally but also operating in different countries.
If you ask the people what they want (and we did in my programme), up to 98% wants to share his or her data if made anonymous for research purposes to cure others. If you ask below 18 years old, it is even almost 100%. Over 90% wants to have access to his or her data. If you ask the ill people, we get over 95%. And guess what, they don’t care how it is stored as long as it is safe and they can control it.
Oscar,
Oscar,
Indeed, patients and other stakeholders on the front-end only care about the Why, not about the How.
Open the data vaults SECURELY
Open the data vaults SECURELY.
I agree with Oscar here. There are too many silos and I dont believe that the proposal above ignores fully the data privacy concerns and issue. There needs to be a standard - pick HL7 and once the vendors are certified agains the data exchange they no longer can focus only on maintaing their old proprietary stacks but due to the competition wil be forced to move to more differentiation - i.e clinical analysis and real time decison support for practitioners. unlock the data (SECURELY) and we can connect, create and cure together!