Have you ever had difficulty getting your health records? Does the idea of your health records being able to be accessed digitally scare you that anyone with the right access information could know all there is to know about your data? www.HealthCataRights.org says they “serve as the portal for those who wish to endorse and support these rights.”
The organizers of HealthDataRights.org include doctors, researchers, software developers, writers, entrepreneurs, health economists, and many others who share a common goal of greater health data availability. They launched their web site just June 22, 2009.
Their web site states, “Many of us have personal and family experiences with the health care system that have convinced us that more openness and accessibility to health data about ourselves or loved ones leads to better, safer, and more effective care. Some of us have seen clearly how restrictions on health data and medical records can lead to great pain and suffering—needlessly, in most cases. There is no specific political or economic agenda or affiliation. This is about people becoming more engaged in their wellness and health, and about the notion that access to one’s own health data can be empowering.”
The Health Data Rights are as follows. You can endorse your support at the web site.
- Have the right to our own health data
- Have the right to know the source of each health data element
- 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 made available in that form
- Have the right to share our health data with others as we see fit
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