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HIPPA - privacy. Is this coercive violation of our rights?
Just Want to Talk | Last Active: Oct 2, 2023 | Replies (32)Comment receiving replies
They are data mining a wide range of information from people from the public they are not entitled to have and would otherwise not have access to. They want it for their own use, sale, leverage, etc. This org is large, professionally connected and heavily funded, including from research sources. They are quite legitimate. But they use people falling under their scope of focus as a data farm in exchange for information and the ability to connection with others. They DO provide valuable assistance, direction and information. But recipients pay a high cost for it. Some may not mind. But I'm not one of those people, at this point. I hit my threshold when they required downloading a funky 2nd rate app right before the conference, and having to provide certain information to also this 3rd party in order to view a conference. After I begrudgingly did even that, creating an account with them too, I still couldn't view. The org didn't provide a link. They passed access off to an online service where you needed to provide addtl disclosure + establish another acct with them. They sprung this on registrants at the last minute- slightly before the long promoted conference started! A final hoop at the last minute. More data given to some unknown online app service. I realized my personal+ medical data is the price of admission. And I don't like it. I want this type of coercive privacy violation stopped. It's a form of abuse of sick people, many without hope or options. It's exploitation. It's offensive to me. We're sick and many, dying people. We're not 'data' in a data farm. I felt desperate when I first had contact with them, as many do. But now I feel somewhat preyed upon and it doesn't feel good. If they get a penny of federal funding, which they likely do, they will be accountable for their approach of withholding their help and new medical knowledge from desperate people unless the people surrender extensive personal and medical privileged information ...aka DATA.
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You said, "They are data mining a wide range of information from people from the public they are not entitled to have and would otherwise not have access to."
But, who decides what information people are entitled to collect?
We have no national "Privacy Policy" or "Privacy Law." HIPAA does not apply in this situation because the organization is not either a Health Insurance Company nor a Health Care Provider (nor a Clearinghouse for either one.)
Can you imagine what would be involved in crafting a national Privacy Law, defining every circumstance to which it would apply, aligning it with state and local regulations, and enforcing it?
For example, how would this align with state drivers' licenses requiring corrective lens restrictions, and medically required driving restrictions? Or with the FAA denying pilot licenses to people with uncontrolled seizure disorders? Or schools needing to know about students with Type 1 diabetes requiring staff monitoring?
When you say "I realized my personal+ medical data is the price of admission. And I don't like it. I want this type of coercive privacy violation stopped..." you need to realize this is not coercive, it is voluntary. The organization has the right to allocate its resources in a way that 1)Reserves it to those most in need of their services and 2)Gives them some sort of "payment" in exchange for their service.
Finally, did you read all the "fine print" they included? I am sure that somewhere within it there was a statement similar to "your personal identifying information will not be shared outside this organization" or something similar.
So, what prevents getting our sensitive information disseminated into the wrong hands? Our personal vigilance. All that said, like you, there are times I have declined to participate in many events because I was not willing to share personal medical, financial or social information.
Did you communicate your outrage directly to the organization? If so, what was their response? That is the best way to register you complaint where it can do the most good.
Sue