Health Data Governance Principles is an initiative of Transform Health that seeks to strengthen the governance principles on health data at the international level.
The Transform Health organization leads a team of more than 130 organizations in five regional and three global working groups for the development of the Health Data Governance Principles. The Health Data Governance Principles are intended to be a tool for governments, technology companies, and other decision makers who store and use health data.
The collection, processing, storage, analysis, use, exchange, and disposal of health data require the implementation of new governance policies to avoid health inequities, perpetuate bias, or discriminate against marginalized communities.
The principles are based on three main pillars: protecting people, promoting the value of health and prioritizing equity.
protect people
The governance of health data must ensure the protection of individuals, groups and communities against the violation of their data. Unprotected health data can expose sensitive information of individuals and communities, which is why special measures for data protection are necessary.
This first pillar has three secondary axes, which are the following:
- Protect people and communities
- Build trust in data systems
- Ensuring data security
Promote the value of health
Health data governance should maximize the value of data use and analysis, as well as improve health outcomes at both the individual and societal levels. Furthermore, data-driven approaches can lead to innovations in health services.
The main aspects of this principle are:
- Improve health systems and services
- Promote data sharing and interoperability
- Facilitate innovation using health data
The lines of action of this principle are the following: they seek to establish rules and guidelines for sharing data, promote the interoperability of data systems, build public health data infrastructure, foster a culture of information and action based on data, among others.
Prioritize equity
This principle seeks to benefit the people and communities whose health data is used. Those who must also have an equitable participation in the value generated by their data in health. This promotes fair data sharing.
The two lines of action are:
- Promote equitable benefits of health data: In other words, it must represent all groups and populations in an equitable manner, in addition to considering the specific needs of individuals and populations.
- Establish data rights and ownership: It is necessary to apply a human rights vision to health data governance, as well as define the roles and responsibilities of government actors. In general, this point is related to data transparency.
The principles were developed by organizations from various continents such as the Asia eHealth Information Network (AeHIN), the Central American Health Informatics Network (RECAINSA), the Inter-American Development Bank (IDB), among others.
See the Health Data Governance Principles site and full information on the principles: https://healthdataprinciples.org/
HEALTH DATA PRINCIPLES
