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    The ethics of USE as well as ACCESS will be vital.  In particular, when it is or is not (as well as when it might be) adversely discriminating against an individual.  Genetic data is an obvious example: just because a person has a genetic disposition to a disease or behaviour, AND it is known, the question remains:  SHOULD it be used.  The answer is not simple!  The same applies to lifestyle behaviour that is revealed from health IoT devices:  WHEN can WHO do WHAT with that knowledge?  This includes the fringe dwellers in the health information ecosystem such as insurers and developers of government policy, as well as anybody involved in the clinical setting or health research.

Monday, November 20

  • Secretary General Digital Enlightenment Forum

    Trusted Data Management in Health Care

    Data management in health care has become a hot issue. More and more data is being collected of and by patients and stored for specific uses.

    • Data of medical treatment is stored in databases of various medical organisations or professionals for use during the life time of the patient and even beyond to improve family medical care.
    • Patients more and more play an active role in their own health monitoring and preventive care (quantifying self) and store their data at service providers.
    • Life sciences research collects (normally anonymised) patient data for their research towards improving people’s health.
    • The pharmaceutical industry collects data to develop their products.
    • Governments stimulate the data collection to improve quality but also reduce costs of medical and social care for their citizens.

    All these developments are very welcome and needed, but they raise many questions and worries about the actual implementation.

    • Who stores the data and controls their use and how does this relate to the individual patient’s privacy and security?
    • How secure is the storage and how transparent are the processes involved?
    • Who can be held responsible and for which steps in the processes if data is lost, data integrity is violated, or systems hacked?
    • How can the data quality and accessibility be guaranteed over time, to the benefit of life time individual health care?

    Member States and states outside the EU have traditionally very different healthcare systems and it is clear there is no “one size fits all” system.

    At the same time, technical companies in the business of digital health care want to develop and market apps, data collection and interface tools, and data analysis systems for an international (or at least an EU) market.

    Current health system approaches form a spectrum, with on one side mass collection and control and single data access points, and on the other side data under control of patients being accessed and shared with health workers. They all have different risks and benefits with respect to security and respect for privacy of the data and the patients themselves. Clearly, work towards overall improvements must first and foremost focus on intuitive interfaces and interoperability of existing and newly developed systems and platforms.

    This Conference will discuss the state of play, the main obstacles and proposed policies and technology solutions to ensure trust in a privacy respecting data environment for patients, professionals and other actors in a transparent and auditable health care environment.

    The conference is organised in cooperation with the EC (DG CNECT) and with the Dutch Ministry of Health (VWS), and supported and hosted by Philips NL.

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  • Secretary General Digital Enlightenment Forum
    Jacques Bus created Pages