However, there are other important aspects that - viewed as a whole, across all the documents - received comparatively little attention. These include the question of who should be held responsible if patient data is used incorrectly - such as if it is used for a research project without the patient's consent. There is also the matter of how researchers can be acknowledged or rewarded for sharing their own research data with other scientists. "We won't be able to improve data sharing until we do more to tackle aspects like these," says Vayena.

Currently, a variety of obstacles stand in the way of this goal. These are partly of a technical nature - for example, the fact that hospitals cannot share data because their different systems for electronic health records are incompatible. There is also, however, a reluctance amongst researchers and companies to share data. In some cases, they do not want to reveal their hard-won data to competitors; in others, they balk at the cost and effort involved in making the information accessible by putting it in a database. Adding to the issue is that patients often hesitate to give consent for their data to be used, because they don't exactly know what will happen with it.


Innovative solutions are needed

"Future guidelines about data sharing should deal with as many of the identified hurdles as possible," says Vayena, who also highlights the need to develop innovative solutions, as previous approaches did not work well enough. For example, new technologies such as blockchain could be implemented as a method of data protection. Alternatively, an incentive system based on reciprocity could be created for researchers, whereby only those who put their own research data into a database could have access to the data of others. Furthermore, digital technologies could be harnessed to allow patients the option of not giving blanket consent for their data to be used in research, but instead tying their consent to individual projects - putting patients more in control.

Such considerations are to be incorporated into the guidelines developed as part of the SPHN initiative, which will then be implemented step by step. First, the guidelines will be adopted by the five Swiss university hospitals currently taking part in the SPHN initiative - that is, Zurich, Basel, Bern, Lausanne and Geneva. These hospitals are currently setting up clinical data management systems that make patient data available for research and facilitate data sharing with research institutions. At the same time, universities are establishing regional centres for the coordination and secure processing of biomedical data. Vayena is convinced of one thing: "If everyone involved in Switzerland signs up to the same well-designed standards, it will mean a giant step forward for data sharing and thus for personalised medicine."

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