Standpoint
“Research and the health system regrettably don’t yet walk in step”
Hospitals routinely gather all kinds of data that could be used to improve future healthcare, and Julia Maurer is working to make them properly accessible to research. She’s explained to us how this works, and where the pitfalls are.
Julia Maurer and her ‘Data Governance and Ethical, Legal, Social Implications’ team aim to improve the accessibility of clinical data. | Photo: ZVG
The Swiss Personalized Health Network (SPHN) was launched in 2017 with the aim of increasing the accessibility of health data for research purposes. It’s now in its third funding phase. Julia Maurer heads the SPHN’s data governance team that’s grappling with associated legal, ethical and social issues.
Julia Maurer, the SPHN is setting up a national data infrastructure. As a clinical researcher, do you wish you’d had access yourself to a system like that?
Sure! Clinical trials generally collect additional data from specific patients. The SPHN wants to be able to analyse all this health data that’s collected on a routine basis and that’s stored in the clinical information systems of our hospitals. It’s a treasure trove for researchers, and we should make better use of it, to the benefit of our patients.
What do we have to do to achieve this?
The data in question vary greatly in quality. Most importantly, they’re not all suitable for comparative purposes. This is why we’ve been working on standards to determine how information is labelled and recorded. We also always have to clarify the ethical and legal issues that are involved – by which I mean the conditions under which we’re actually allowed to use the data. This can be regulated, for example, by the general consent form that’s already in use in hospitals, and which can allow data to be made available for research purposes. Our technological infrastructure – BioMedIT – offers a secure environment for analysing the data.
Are the hospitals playing their part in this standardisation process?
Efficient data exchange also benefits hospitals. For example, it can help them with quality assurance or with calculating capacity utilisation. Researchers benefit from this indirectly. Regrettably, in Switzerland, research and the healthcare system don’t yet walk in step.
In concrete terms, what might a researcher be able to achieve with your infrastructure?
The aim of the SPHN is to create a kind of menu – a catalogue of metadata – so that researchers can see just what data are available. They can then order what they need. We only deliver what’s really necessary.
What exactly is the role of the SPHN in this?
The SPHN can act as an intermediary when people are implementing large-scale national projects. By establishing uniform framework conditions across the country, we can offer a research infrastructure and a working environment that are accepted by university hospitals, ethics committees and data protection officers alike. The SPHN itself doesn’t receive any data. And for reasons of data protection, data are only shared under specific conditions.
Is this new infrastructure secure?
Yes. Some people even think that the barriers to access are too high. But the SPHN has had to strike a balance. Researchers can still contact hospital administrators directly on an individual basis if they want their data. But that approach is very time-consuming, especially if you’re involved in a project with several different hospitals. And in the final analysis, buying data from abroad instead isn’t an attractive option either.
