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rappleman

Privacy vs Research

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Interested in your take on the following. Recently learned from a young person studying for pharmacy licensing that Nebraska law requires physicians, patients themselves, and pharmacists to report to the state the name, address, phone and social security number of all Parkinson’s patients, diagnoses and “suspected” diagnoses, and every recipient of a prescription for any of the common PD meds. The supposed purpose is to have a research database because of the “high incidence” of PD in the state (although NE ranks 15th per the CDC). Research is wonderful of course but I suspect most people aren’t thrilled at having their personal contact information logged by government simply because they take a certain medicine. The database is by law publicly available for research. An academic survey said it had “good accessibility, low reliability and consistency, low analytic utility, and moderate enhancement potential”.

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Rappleman,

I actually had to pull up the law in order to believe it. I will say, first and foremost, I believe this should be a volunteer situation and not a mandate.

I could see how it could be a research opportunity, I also see it as an invasion of privacy. I would guess that most PD patients would volunteer this information with the hopes to advance research and possible development of new physical and medication therapy. I know that many PD patients would try almost anything to better their situation.

I did notice that in the law it stated that this is a state law which would avoid the Federal law of HIPPA. It has always been taught and acknowledged that the most stringent law, Federal or State, would be respected as the rule. This is the rule when it comes to medical marijuana. The State may say it is legal, but it is still illegal on the Federal level. In this case the Federal law of patient privacy should override the State law. Also, since this is a state law, there should be no need for a Federal indentifier such as the Social Security number.

It can also look like lobbiest for drug companies, insurance companies, and agents for Medicare might be involved. This may result in insurance companies denying claims due to preexisting condition. 

The last blatant issue I see is that some PD medication can be used for other ailments. For example, Mirapex, Requip, and Sinemet can also be used for Restless Leg Syndrome. This would then force the Pharmacist to report this without a diagnosis of PD.

I wanted to reply to this as soon as I read it due to my beliefs as a Pharmacist and PD patient. As I investigate this further, I may post more of my beliefs.

I hope this helps and please keep me posted.

  • Thanks 1

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Mark I'd pretty much the same reaction but posted it a bit more neutrally so as not to presuppose. Thank you for speaking plainly. Will let you know if learn more. The law's been in place approaching 20 years. To my knowledge the only state doing it.

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Rappleman,

I knew that it had been on the books for a while. I had a speaking engagement at the University of Nebraska about 10 years ago and very little was muttered about it.

I too usually write in narrative neither choosing sides and reporting facts. I had to pull myself from center because you asked what I thought of this. It does affect me on both fronts, as a patient and a Pharmacist.

Keep me posted and I'll do the same.

I hope this helps and please keep me posted.

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