Report calls for coordinated strategy to operationalize benefits, responsible secondary use of health data
EPFL Center for Digital Trust (C4DT) has just issued a paper to address Switzerland's standstill in the secondary use of health data: the repurposing of health data beyond the original reason for which it was collected.
Despite growing demand from society and clear benefits for public health, research, and innovation, Switzerland lacks the political coordination and institutional commitment needed to foster the secondary use of health data. Currently, responsibilities are fragmented among federal and cantonal authorities, legal and ethical requirements are perceived as complex and overlapping, and a risk-averse culture limits the sharing of health data for secondary purposes.
The societal and health-system benefits from the secondary use of data are well recognized. However, stakeholders are caught in a vicious cycle where data is not shared due to perceived risks, resulting in no measurable benefits, which further discourages action.
This benefit-risk feedback loop reinforces inaction and institutional hesitation toward making health data available for secondary use outside of their institutions. Institutions remain uncertain about how to comply with evolving legal and ethical standards, including providing technical guarantees for data privacy and security, without risking reputational harm. There is a need for political alignment and support to enable institutions to share health data responsibly and realize both the individual and societal benefits of its secondary use.
The focus should be placed on establishing a shared vision, clear policies that integrate the use of health data with data-protection regulations, and incentives to foster data sharing, according to the report. This would require practical measures for harmonizing institutional data-sharing policies, along with operational support to ensure they are implemented responsibly and beneficially.
Why is it important?
To maintain the quality, sustainability, and innovation capacity of its health care system, Switzerland must prioritize the secondary use of health data. Without a coordinated strategy that fosters political coordination and institutional commitment, broader national efforts for the sharing of health data will not be successful. This will have significant consequences for the Swiss health system.
Delays in providing access to health data for secondary purposes will worsen the financial strain on Switzerland's expensive health care system, which continues to face rising costs and places an increasingly heavy burden on households. Without broad national access to health data for secondary use, Switzerland risks falling behind in health care innovation, losing ground to other countries, and seeing critical research and clinical trials move abroad.
Institutions, as the data providers, are at the center of secondary use, as it depends almost entirely on data they are responsible for. However, without clear benefits and targeted support for responsible health data sharing and secondary use, institutions will continue to face a first-mover problem.
Six recommendations
The document, written by Paola Daniore, scientist at C4DT, gives six recommendations to support institutions in responsibly making health data available for secondary use.
- A common vision for secondary use of health data
- Communicating the benefits of secondary use of health
- Providing financial (dis-)incentives
- Exploiting and populating existing metadata registries
- Providing a guideline for institutional risk assessment
- Aligning regulations to merge the use of health data with its protection
More information:
Closing the benefit-risk loop: Realizing the value of secondary use of health data in Switzerland. drive.switch.ch/index.php/s/KMsuEJB1To1NFNA
Provided by Ecole Polytechnique Federale de Lausanne
