Heads up! Proposal for a Societal Compact for the secondary use of health data
roposal for a Societal Compact for the secondary use of health data” is incredible work The Digital Health Society and The European Institute for Innovation Through Health Data are working on: The Round Table programme comprises of 2 virtual meetings of up to 30 multi-stakeholder experts from across Europe to discuss important health data and digital subjects. The Digital Health Society and I~HD then independently create reports with recommendations for actions to address the issues identified in the Round Table. The heart of the Compact is a set of data use commitments that adopting organisations agree to adhere to whenever they reuse health data for (secondary use) purposes that fall within the scope of this Compact.
As mentioned, this report is a consensus of over 30 invited expert stakeholders in technology, data science, health informatics, patient representation, regulation, trade and industry representation, academia and policy-setting. The Round Tables were held on 22rd September and 13th October 2022 and this report is published in June 2023.
These principles apply to the use of health data, which may be collected through health systems (including public sector and private hospitals and clinics), by businesses (including Pharma, MedTech and technology companies) or by individuals and families about their own health and care, and health related data which may be collected outside of the health system about situations that impact on health, such as climate and housing.
These principles relate to the reuse of health and health related data for “secondary purposes”, which are outside of the direct provision of health and care services to individuals or their families for which the data was initially collected. Secondary purposes are usually undertaken by analysing the health data on multiple (often large numbers of) patents in order to discover new knowledge and insights that help to improve health, health and care services or to develop new approaches and products to prevent or treat illness.
Each person whose data is being used for secondary purposes, such as research, might be an indirect beneficiary through the results of those data uses, or might not personally benefit from those uses because the benefit will be experienced by other persons, such as other patients with a similar health condition. In these principles these secondary uses are referred to as reuses of health and health related data.