Alcimed Position Paper – Health data: which models for tomorrow?

In a context of exponential development of data collection, storage and calculation capacities, the exploitation of health data seems unavoidable and promising for patients. However, as they are so personal, health data and their use raise numerous political, ethical and economic questions.

This position paper provides key elements for all private and public stakeholders in the healthcare sector to understand the issues related to the sharing and use of health data: protection and accessibility, governance and control of uses, and model of value redistribution.

1. How can we preserve citizens’ fundamental right to privacy while supporting the human and societal progress promised by the use of personal health data?

Accepting the collection and exploitation of our personal data means giving up the right to exclusive ownership of our health data. But we are willing to give up some of our individual freedoms when we sense the potential benefits of scientific innovation. The issue is then to find a data management model that balances privacy protection and the use of health data for medical progress.

2. How should be roles and responsibilities regarding the exploitation of health data distributed?

The issue of health data sharing is directly related to the issue of security. A clearly defined framework is necessary, on the one hand to regulate access to data, and on the other hand to prevent misuse. This framework involves defining the responsibilities of each stakeholder and developing legal tools to ensure its application.

3. How should we (re)-distribute the value created by the exploitation of health data?

The huge investments in data by pharmaceutical companies certainly raise the question of the expected financial benefits of the exploitation of health data. It is necessary to reflect on the status and value of data in order to define a fair and equitable redistribution between the stakeholders who provide and analyze these data.

In this position paper, you will explore:

• The place of the patient-citizen in decisions related to the necessary arbitrage between privacy and sharing of personal data.
• The key issues related to the framework for the use of health data and the sharing of responsibilities between the institutional and private stakeholders involved.
• The prerequisites for the construction of economic models which guarantee a fair distribution of the value created by the exploitation of health data.