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Agreed, the individual records are not specifically secret. The regulations are to prevent unauthorized disclosure and misuse. Unfortunatly that leaves a lot o

Agreed, the individual records are not specifically secret. The regulations are to prevent unauthorized disclosure and misuse. Unfortunatly that leaves a lot of leeway. The major EMR vendors are all aggregating patient data in cloud services and taking it across borders to where there is no transparency for what is being done with it. The regulations were written with a 90's understanding of technology. A more appropriate regulation today would be to create a category of legally privileged PHI that is strictly inadmissable in legal proceedings and with heavy fines for unauthorized use and disclosure. However, I don't see privacy legislation getting any better as the people inside govt and academia absolutely hate privacy as a concept because they are the specific targets of limiting their discretion about whose data they can snoop. We're in an era of institutional capture by people without ideals or principles, and it's probably unwise to expect altruistic public interest policy like 90's-style privacy legislation from any of them anytime soon.

potatoman22 3y ago
In the medical field, the academics who "snoop" your data are doing so to conduct analyses and build models to improve your care.
- motohagiography 3y ago
  Ask them how they feel about having their names and the names of the people they hire attached to queries of PHI in aggregated health information repositories, and whether those people have had the level of background checks that public service staff who typically do this have had. Then ask them whether they will bear any accountability for losing the data they are entrusted with, have their REB decisions subject to freedom of information, or be subject to consent directives by patients, and why they engage big-N consulting firms to misrepresent system design on their behalf. Then ask them whether the research is restricted to clinicial and biological research, or if their "research" includes providing data people in the social sciences. Technically, they are building models to publish or perish, establish data feifs in their institutions for attracting grant money, and to support policy objectives for the revolving door between gov and academia and some troubling third party NGOs, with "care," being a distant abstraction. The academics I encountered doing privacy work for PHI data sets seemed to be interested in everything except responsibility and stewardship. My care indeed.

potatoman22 3y ago

In the medical field, the academics who "snoop" your data are doing so to conduct analyses and build models to improve your care.

motohagiography 3y ago
Ask them how they feel about having their names and the names of the people they hire attached to queries of PHI in aggregated health information repositories, and whether those people have had the level of background checks that public service staff who typically do this have had. Then ask them whether they will bear any accountability for losing the data they are entrusted with, have their REB decisions subject to freedom of information, or be subject to consent directives by patients, and why they engage big-N consulting firms to misrepresent system design on their behalf. Then ask them whether the research is restricted to clinicial and biological research, or if their "research" includes providing data people in the social sciences. Technically, they are building models to publish or perish, establish data feifs in their institutions for attracting grant money, and to support policy objectives for the revolving door between gov and academia and some troubling third party NGOs, with "care," being a distant abstraction. The academics I encountered doing privacy work for PHI data sets seemed to be interested in everything except responsibility and stewardship. My care indeed.