Retrospect | Data Management in Research and Development

Sven Trelle, Co-Director of the Clinical Trial Unit CTU at the University of Bern, gave an insight into the basics of data management in his keynote speech. He explained the regulatory framework, the requirements and standards as well as the aspects of «good science» in the 21st century. This laid the foundation for the subsequent workshops and some lively discussions.

Workshop «Best Practice with Patient Data»

In his workshop Sven Trelle emphasized, that managing data in health technology always means handling data from individuals, e.g. personal data. He explained that researchers have to follow the principles of anonymization to carry out research with health-related personal data and must be aware that having truly anonymous data is hardly possible. Instead, data is in general coded, meaning that data is linked to a specific person via a code. The legislation allows us conducting research with such coded data, under the prerequisite that a person working with the data does not have access to the key for relinking data to a specific person. As best practice, Trelle recommends to have a person not directly involved in the research project for managing and securing they key.

Workshop «Digital Twin – the Future of Data Management in Sport & Health»

We have seen exponential data growth in the field of sports and health in the last couple of years. Markus Stadler from Datico Sport & Health talked in his workshop about new technical possibilities, different data exchanges and interdisciplinary approaches that require new solutions for data management. The main problem is the existence of different data islands instead of a single central database. A central database makes it possible to put the data in connection, and then, in context. Actually, the classic approach in sports is test – plan – act – test and so on. However, the time that passes between acting and testing, for example, is a black box. You do not know if something has worked until you test again. This is where a digital twin comes in. Based on the data in the central database, data models and intelligent algorithms create analytics and examine the effect in an athlete's digital twin.

Workshop «Open data and FAIR»

Prof. Dr Serge Bignens, Head of the Institute for Medical Informatics at the Bern University of Applied Sciences, introduced the topic of Open Data and FAIR principles. He then reported on the experiences from data science projects at the Institute for Medical Informatics. In the discussion that followed, two main challenges were identified in the context of Open Data: Clean data management must be considered and addressed from the beginning of a project and it has its price. Research funding agencies such as the SNSF should provide funding or an Open Data platform for health data to support making research data available according to FAIR. Furthermore, an entry point in the form of a platform is needed to give researchers access to available data.

Outlook

The BFH Centre Health Technologies, which has reorganised itself in 2020, would like to hold regular workshops on health care topics in the future. A next event is planned for June 2021.

BFH Centre Health Technologies

The BFH Centre Health Technologies conducts applied research and development in medical technology, rehabilitation, (digital) healthcare and sport. Well networked with national and international players from the healthcare and sports sectors, the researchers develop and evaluate technologies that improve the quality of life of patients and promote the health of society and the performance of athletes.