Building Trust in Health Data

Health data is often not fit for crucial reuse purposes such as clinical research, decision making, value-based health care. We therefore catalyse stakeholders to scale up their data quality, by coaching, educating and equipping them with instruments, organising assessments, providing insights and strategies to benchmark and enhance their health data quality, and providing expert support in all phases of the research lifecycle.

All organisations, and the public, need to trust the ways in which health data is used, and by whom. The General Data Protection Regulation (GDPR) has heightened our awareness of this. We have translated our expertise in data protection for reuse purposes into codes of practices, educational and certification programmes, which we provide to organisations and European projects.

With more and more health ICT systems collecting and exchanging health data, we see a growing demand to demonstrate the trustworthiness of those systems. Using 1700 criteria and a standardised conformity assessment framework, we assess and certify the quality and governance of health ICT platforms.

Interoperability standards are vital to scaling up health data use, even more so given the rise of patient and citizen-generated data. i~HD staff and experts have a long history of developing international health data interoperability standards, and their adoption into products and health ecosystems, connecting clinical information between silos to enable safer and more effective patient care, and big data research.

Organisations handling health data want to provide assurance they do so in trustworthy ways. i~HD programmes offer audits for data, ICT systems, information governance and skills. As a neutral institute, i~HD is best positioned to award quality labels to stakeholders that showcase their engagement, quality and accountability.

We know that everybody needs to do more, and invest more, in health data through improved models of healthcare delivery, patient empowerment, and the development of innovative diagnostics and treatments. We help to stimulate this multi-stakeholder momentum through conferences, workshops, think tanks, education and policy influence.