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
The Conference took place in: Philips Centre, Amstelplein 2, Amsterdam, NL
Presentations are lInked to the name of the speakers below
A full report is available as pdf HERE
Photographs can be seen HERE
9.30 – 10.45 Opening
- George Metakides, President Digital Enlightenment Forum
- Walter van Kuijen, Senior Vice President Global Governance and Public Affairs, Philips
- Edith Schippers, Minister of Health, Welfare and Sports, The Netherlands
- Paul Timmers, Director Digital Society, Trust and Security, European Commission - DG CNECT
10.45 - 11.15 Coffee Break
11.15 – 12.45 Keynotes
- Ernst Hafen (IMSB, ETH Zürich, CH), MIDATA.coop – Enabling efficient linkage of health data by citizen-controlled data access
- Michiel Sprenger (Nictiz, NL), Quality of Information as a Prerequisite for Quality of Care
- Jacob Hofdijk (Casemix, CQT Health & Care Group), Key principles for the design and delivery of person-centred, integrated care systems - The Blue Line connecting patient data safe and secure through the silo’s.
12.45 - 13.45 Lunch
13.45 -15.30 Project Presentations
- Jos Dumortier (Time.Lex, BE) - The AEGLE Infrastructure for big data analytics
- Xander Heemskerk (Director Product Security, Philips, NL) - Building Trustworthy Health Care Applications: an holistic approach to address security in products and services
- Wessel Kraaij (TNO, Univ Leiden, NL) - Towards an ecosystem for privacy respecting analysis of distributed health data
- Mike Yeh (Microsoft) - Cloud in Health: A Regulatory Framework for Improving Outcomes
- Dimitris Potoglou (Cardiff Univ, UK) - Privacy of Health Records: Evidence from a pan-European study
15.30 - 15.50 Coffee Break
15.50 - 17.10 Panel Discussion: The future of Data in Health Care
Chair: Jan Adriaenssens (iMinds, BE)
Panel members: Steven Posnack (ONC, Dept of Health and Human Services, US), Jamie Smith (Ctrl-Shift, UK), Steven Seyffert (Capgemini Consulting), Luk Vervenne (Synergetics, BE)