The World Privacy Forum submitted public comments today to the National Science Foundation in response to its request for information about a national privacy research strategy. WPF urged a research focus on statistical parity and its implementation. Statistical parity is a term WPF’s Pam Dixon coined at the FTC’s Big Data, Tool For Inclusion or Exclusion? workshop in September 2014. Here is Dixon’s definition of the term:
The World Privacy Forum provided an intervention for the Civil Society Consultation on the Universal Periodic Review of the United States recommending that health information should only be disclosed for national security purposes pursuant to a judicial warrant, and that there must be procedures under which record keepers can challenge national security demands for health
The World Privacy Forum will be speaking about medical and health privacy rights in the Universal Periodic Review as part of the Civil Society Consultation for the United States. The UPR is an important cyclical process run under the auspices of the UN Human Rights Council. The last UPR was in 2010. “The Universal Periodic
You can certainly ask to have your records deleted, but it may not be that easy. After a health record has been created and exchanged via an HIE, how your record is managed in that HIE is going to vary considerably. But generally speaking, it is rare for any health care provider to outright delete a health file.
HIE stands for “Health Information Exchange.” We encourage all patients to request a copy of their medical records to check for errors, whether in paper or digital format. Begin any process of HIE discovery with your health care provider. It will likely be your health care providers who are able to let you know if your records have been exchanged, and if so, where.