Agenda for future research

It is clear that information technology and eHealth developments are becoming increasingly important as a support tool on different health care levels. In relation to two particular eHealth applications - eHealth records and eHealth smart cards - the discussion seems to limit itself to technical and legal instrumental issues. A rather aggressive approach to improve the security of health information is needed, without being opposed to the use of sensitive health information in health care.

But the current approach is too reductionist. In general terms too little attention is being paid to the particular nature of health care, as a sociological, cultural, political and economic construct. Health care is not like other industries; moreover it is directly related to welfare issues. Universal access and quality are aspects which must be included in implementing eHealth. Socio-technical choices in health care have to be made within the specific normative, regulative and cultural context of regions or nations.

Following Orlikowksi, IT research can benefit from policy, organisational and health services studies, especially from institutionalism (with institutional forces acting both as enablers and constrainers of actions) to understand ‘how institutions influence the design, use, and consequences of technologies, either within or across organizations’. Orlikowski has used Giddens’ Theory of Structuration to underscore the duality of IT as objective reality and as socially constructed product. Underlying assumptions, expectations, and interpretations of technology (technological frames) are central to understanding technological development, use and change in social contexts. The mutual adaptation of technology and social context involves reciprocal causation. Orlikowski focuses on organisations, but the line of reasoning can be broadened to policy contexts too. Technological frames of key groups in society are significantly different and very little knowledge is currently being developed on how to integrate and handle the different perspectives on eHealth in general and personal data management in particular. Information infrastructures are shaped and socially constructed within social contexts. Information infrastructures and more particularly, the design and implementation processes that lead to their construction and operation, have to be approached as complex interaction processes which are embedded in larger, contextual domains. Regulative, normative and/or cognitive elements transform not only the delivery and organization of health care, they reflect and affect at the same time how health related personal data is valued, used and abused.

Therefore a future in-depth comparative analysis of social shaping of technology in health care with a particular attention on profiling is needed. This in-depth study would be of added value for ‘late starters’ and would enable to make an inventory of concerns and measures taken by early starters, taking into account the organisational principles of the respective welfare regimes.

In 2007 the Article 29 Data Protection Working Party made efforts to develop a draft framework for the processing of personal data relating to health in electronic health records. It is argued by some authors that ‘additional legislative measure need to be developed in order to ensure medical data protection on a multinational level and enable health telematics on a larger scale in accordance with the free movement of goods and services’ (Dierks, 2003, 120). This type of ‘reactive’ actions should be accompanied by ‘proactive regulatory input’ (Dumortier and Goemans, 2004). Focusing on ‘privacy by design’ means that privacy protection requirements should be implemented ‘at the earliest framing of programs or services and in all successive activies’, rather than focus on ‘data controller’s compliance with privacy protection’ (Dumortier and Goeman, 2004, 12). The idea of proactive regulatory input provides opportunities for European countries that not yet (fully) implemented an electronic medical record system, to think about the privacy by design for eHealth applications.

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