From Stanford Libraries:
Stanford Libraries and more than 30 partners, including Proteus Digital Health, today [2/21] unveiled Guiding Principles on Ethics in Digital Health resulting from a multiday seminar that brought together industry, academic and nonprofit leaders to address the growing concern about management and use of personal health data by digital health organizations.
The document begins to define 10 principles for digital health entities to ensure the ethical use of their products and services and the information they collect and generate. These principles aim to help digital health organizations navigate potential conflicts between individuals’ need for privacy and society’s need for protecting public health.
“Libraries have long served as staunch advocates of protecting personal data,” said Michael A. Keller, Stanford’s university librarian and vice provost for teaching and learning. “An academic library’s online and offline environments are designed to pique conversation and debate, and given the exponential rate of developments occurring in the digital health space, we offered to initiate the conversation and report out on results of the seminar.”
The resulting Guiding Principles represent the shared views of over 30 participants:
- The products of digital health companies should always work in patients’ interests.
- Sharing digital health information should always be to improve a patient’s outcomes and those of others.
- “Do no harm” should apply to the use and sharing of all digital health information.
- Patients should never be forced to use digital health products against their wishes.
- Patients should be able to decide whether their information is shared, and to know how a digital health company uses information to generate revenues.
- Digital health information should be accurate.
- Digital health information should be protected with strong security tools.
- Security violations should be reported promptly along with what is being done to fix them.
- Digital health products should allow patients to be more connected to their care givers.
- Patients should be actively engaged in the community that is shaping digital health products.