I have enjoyed participating in the National Dialogue about Health IT. One of the challenges put forward to my suggestion that decision makers should insist on FOSS in Health IT, was the following comment:
in terms of privacy, there’s nothing inherent in FOSS that makes it superior to all proprietary products.
I have discussed this issue before, mostly when discussing HealthVault, but my comments have been spread out over several articles.
There is an inherent benefit to privacy, confidentiality and security for FOSS health IT systems.
There is another idea on the National Dialogue site that I thought was useful. It separates the concepts of privacy and confidentiality. Most people blur the concepts of privacy, security and confidentiality and talk about them in the same mouthful. For now I will consider that “privacy” is the ability to control who gets to see your data. Although my points apply to confidentiality and security as well.
FOSS Health IT are inherently better ways to respect privacy because they support “trust-but-verify”, while proprietary systems just support trust.
The only way to know what a program is doing is to read the most human-readable version of that program, which is typically called sourcecode. There are countless examples of programs doing things other than what they appear to be doing. Viruses, Spyware, Monitoring features and Bugs are classic examples of this.
When a proprietary Health IT program says it respects your privacy, there is no way to know for a user to know if this is true directly, he must trust the proprietary vendor. The fact that most proprietary vendors are honest is irrelevant. The trouble with dishonest people is that you cannot tell the difference between them and honest people. We cannot know which proprietary Health IT vendors are respecting privacy and which are not. Also, the same large organizations who you might normally “trust” have in fact a very poor history of abusing privacy; Microsoft being the best example.
So does HealthVault respect privacy? Probably. But there is no way to be sure without reading the code.
Does Dossia respect privacy? Probably. But we can check by auditing the sourcecode of Indivo, because Dossia is based the FOSS Indivo project. Suppose that you believe that Indivo does not do a sufficient job of respecting privacy, or you find a back door (unlikely). You can fork the code, remove or change the offending portions of Indivo, and then run your own Indivo server with the privacy features that you want.
FOSS supports both trust-but-verify and trust-but-fork which is the only way to absolutely certain that privacy is maintained.
Therefore FOSS does have a fundamental advantage over proprietary software with regards to privacy concerns.