23 May 2018. What preconditions would help – or hinder – the exchange of data? This question was a key focus of the Medical Informatics Initiative’s workshop on data sharing, which took place from 19 to 20 April 2018 in Berlin, Germany. Attendees agreed that data sharing cannot be enforced from above; instead, standardised structures and regulations can pave the way for the necessary cultural change.
Speakers from diverse national and international projects, initiatives and studies presented their views. In addition to discussing moral and ethical obligations to share data, participants explored concrete ways of promoting exchange. For example, incentives could be provided, e.g. by making funding approval contingent upon certain criteria, such as the data’s downstream usability. However, the infrastructure needed for effective data sharing requires long-term financing. In many cases, the provision of data is cut short because funds are not guaranteed for the project’s duration.
Data stewards – a new profession
The workshop also highlighted the essential role played by the training of researchers and IT professionals in achieving a lasting cultural change. This shift can only occur if awareness of these issues is raised at an early point in education. This includes drawing attention to a new profession – that of a data steward, a role that extends beyond the parameters of traditional occupations, e.g. documentation and data management. To this end, training programs must be created, and corresponding curricula developed.
Implications for the Medical Informatics Initiative
As the workshop drew to a close, the consequences for the Medical Informatics Initiative were summarised. For one, standardised access and usage requirements need to be defined. Furthermore, the corresponding infrastructure for data sharing must be established.