Although all of us would prefer to believe that our medical and health information is private, regardless of who has it or where it is stored, there are demonstrable gaps with respect to the actual privacy and protection of health information. There are important questions, too – both legal and policy-related – about who has or should have access to what data, and both its confidentiality and security.
eHI endeavors to educate the public with respect to current privacy laws and regulations, as well as political and legislative efforts, governing or related to health information. Regular privacy briefings and workgroups are available to eHI members, often with the participation of experts in the field.
In 2020, with support from the Robert Wood Johnson Foundation (RWJF), eHI collaborated with the Center for Democracy and Technology (CDT), on a Consumer Privacy Framework for Health Data, a culmination of a year-long collaborative process to set standards around the collection and use of consumer health information in absence of federal privacy legislation. Those standards, and an accompanying accountability structure, were finalized and publicly released in February of 2021; a second phase of work, also funded by RWJF, is currently underway. This next year of work will focus on deepening consumer and patient engagement in refining the framework, and particularly the engagement of those representing vulnerable and underserved populations, in order to ensure that the framework addresses issues of equity.
For more information about privacy briefings and workgroups, please contact Alice Leiter.