Article published in npj Digital Medicine raises the importance of privacy protection for the use of digital data in health systems, proposing an approach that supports the use and benefits of disclosure of this type of data to improve health and quality of care.
The National Academy of Medicine, in the United States, has long proposed the evolution towards a learning healthcare system, that is, one that produces baseline data and is constantly updated during the care process. A system with these characteristics seeks a balance between protecting patient data and making the data available to improve care in health systems, as well as medical care, through research.
The article, “Privacy protections to encourage use of health-relevant digital data in a learning health system,” by authors DevenMcGraw, data privacy specialist, and Kenneth D. Mandl, director of the Health Informatics program at Boston Children's Hospital, was recently published in the journal Nature and explains the importance of seeking a learning healthcare system, and the challenges that exist around U.S. health privacy laws. "U.S. health privacy laws do not cover data collected by many digital consumer technologies and have not been updated to address concerns about the entry of large technology companies into healthcare," they explain.
The article addresses the limitations of the Health Insurance Portability and Accountability Act of 1996 (HIPAA) and the Health Information Technology for Economic and Clinical Health Act of 2009 (HITECH).
The approach proposed by the authors seeks not only to protect relevant health data, but also to promote and use data for the benefit of improving health care. The protections they propose should apply to agencies and entities that collect such data, regardless of whether they are covered by federal privacy laws.
Los autores proponen algunas de las siguientes características:
- Increased transparency and choice for consumers.
- Limitations on how health data can be collected, used, and disclosed versus relying only on consent.
- Mechanisms to assure beneficial uses of health relevant data, e.g., independent data ethics boards, health trusts, impact assessments, and accountable data custodians.
- Strengthened remedies for harms incurred from malevolent uses of health data.
- Accountability for uses of de-identified data.
To read the full article, click on the following link: https://www.nature.com/articles/s41746-020-00362-8
