The Precision Medicine Initiative was announced by President Barack Obama six months ago, and this week the administration detailed new commitments to the program.
The administration released a rough draft for guiding principles in regard to privacy and trust when it comes to precision medicine projects. It offers guidance on governance; transparency; data sharing, access and use; data security and more.
Some of the guidelines include:
- Unauthorized re-identification and re-contacting of participants will be expressly prohibited
- Mechanisms should be created to ensure data integrity is preserved at all stages: collection, maintenance, use, and dissemination
- A Data Security Framework should be developed with help from experts in data science, security and health IT
The White House is seeking comment from the public on the principles through Aug. 7.
In addition, the Office of the National Coordinator for Health IT and Office for Civil Rights will be working together to address any barriers that prevent patients from obtaining their data, according to the fact sheet. OCR will create more guidance to help the public and providers understand consumer rights to data under HIPAA, and ONC will create a tool that encourages patients to get their data.
The White House also is honoring "Champions of Change" in precision medicine, which includes nine individuals who are working to use data and innovation to improve healthcare.
Three of those honored include:
- Amanda Haddock, president and co-founder of Dragon Master Foundation. The foundation is a nonprofit that looks at technology to help cancer researchers and improve biomedical discovery. It uses informatics and data to create precision medicine approaches for cancer therapeutics.
- Anish Sebastian, CEO and co-founder of Babyscripts Inc. The company uses mobile therapeutics to assist in pre-natal care.
- Howard Look, founder and CEO of Tidepool, a nonprofit that aims to help patients managing Type 1 Diabetes through open source software. The company works with device makers to make patient-owned health data more easily accessible.
These initiatives by the administration will also see a boost if a draft funding bill released by the House Appropriations Committee is passed; it provides the full $200 million requested by Obama for the Precision Medicine Initiative.
To learn more:
- here's the fact sheet