On Monday night, a website called HealthDataRights.org went live.Â The site promotes better access to one's own health data, and serves as a portal where individuals and entities can endorse/support A Declaration of Health Data Rights. "We the people," the site asserts: 1) Have the right to our own health data; 2) Have the right to know the source of each health data element; 3) Have the right to take possession of a complete copy of our individual health data, without delay, at minimal or no cost; if data exist in computable form, they must be available in that form; 4) Have the right to share our health data with others as we see fit. Having access to one's own health data is already a right - just not one that is well known or enforced.Â Under the HIPAA Privacy Rule, individuals have a right to obtain a copy of their health data.Â They can also get this copy "in the form or format requested" (e.g. electronic format), if it is "readily producible" in that format.Â There are some exceptions to this right, including health data compiled for the purpose of a civil or criminal proceeding.Â Also under the Rule, covered entities have 30 days to comply with an individual's request (and this can be extended to 60 days).Â Entities can charge a reasonable fee for copying the health record, the limits of which are set by state law.Â Notwithstanding this legal right, failure to provide individuals with access to their data is one of the top 5 HIPAA-related complaints received by the U.S.
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