Personal Health Information and Research

[ClimberGuy]

My question involves public health law in the State of: CA

By the books, HIPAA allows for an entity to use or release personal health information (PHI) for the purpose of research without individual consent based on the decision of an Institutional Review Board's decision that authorization is not needed,

Do I have the right to request that my PHI not be released for research purposes? By all intents and purposes, the IRB and researcher must take the necessary steps to protect the individual's identity, privacy, confidentiality.

I just received a letter from my HMO requesting that I participate in a research study based on the fact that I have been diagnosed with "illness A". This request came via general USPS courier and fully disclosed the illness and my identity. No attempt was made to protect my rightful expectation of provider/client confidentiality.

I am pursuing a career in a field where the stigma of Illness A could inhibit admission to grad school, internships and employment. By law it isn't legal to discriminate based on Illness A but one cannot eliminate stigma. it is very possible that the very researchers who have associated my name with illness A are potential co-workers and or employers. Its not like I'm trying to hide anything but based on the topic of illness A, I should have the right to selective disclosure where legal.

Can I revoke my HMO's right to release my PHI for research purposes? even if my HMO is performing the research? Which takes priority, HIPAA or my rightful expectation of confidentiality based on the code of ethics by which my health care provider must abide by.

[ClimberGuy]

I just received a letter from a research team at my HMO (separate from the business operations).
NOTE:
a) the letter came from a research team, not the HMO business offices. The researchers had my identity and objective knowledge of my "illness". And fully disclosed that information in the letter. My information
was already in the hands of strangers not sworn to confidentiality by any governing body.
B) yes the HMO has my PHI for business purposes
c) The question is not about it being a crime to open USPS mail. I never mentioned "employer"
d) The question doesn't request a subjective response about paranoia which cannot be made without knowing the entire context of he situation.

e) The question is: Can I prevent my HMO (and care provider) from releasing my PHI to their and other researchers? The answer has far reaching legal ramifications for many other than myself.
On a legal forum. I would have expected the question to be read and fully understood prior to responding. That's why I posted it here.

[Mr. Knowitall]

Boy, you do have an attitude, don't you. What's that last sentence about? You were instructed not to post to your own thread, and were directed here if you wanted more information.

If the HMO is requesting your permission to include you in a study, it reasonably follows that under the terms of the study they cannot include you without your permission. I cannot read the document you signed or are thinking about signing from here, but even if it is of indefinite duration I don't see why you couldn't later revoke your consent to the sharing of information. In terms of in-house use of your PHI and associated data, no, you're not going to be able to prevent your insurers from using that information.

We would need more information to begin to guess if any inappropriate sharing of information occurred. You have the right to file a complaint if you believe your HIPAA rights were violated.

[ClimberGuy]

No attitude. Just honest response that my question wasn't read by the first person who responded. It clearly isn't understood again as the concern is not with them asking me to participate. Its the fact that they released sensitive information in a letter sent via non-certified carrier not requiring a signature. If it had been accidentally delivered to someone else, my rights to privacy would have been breached.

I do have the right to limit their use of my information. They informed me of that right and merely have to issue them a "do not contact" letter and a letter revoking my authorization to use my private health information (PHI) for research purposes.

Unfortunately this thread is going nowhere positive. I will close it if possible or ask the moderator to delete it.

Thanks for the response and I'm sorry but it wasn't any help as it didn't pertain to the initial concern.

[Mr. Knowitall]

I must somehow not be seeing the response between your original post and your follow-up.

Again, unless we're speaking of a voluntary policy, you cannot prevent your insurance company from using your personal health information in-house, and you can expect that they will use it in-house for any number of purposes. That's a separate issue from the use of the information by third parties. It may still be subject to analysis via third parties in an anonymous form (i.e., if it's conveyed with no personally identifying information).