HIPPA - privacy. Is this coercive violation of our rights?

Posted by rsfcowgirl @rsfcowgirl, Sep 20, 2023

A very well known and helpful non profit, independent medical support association hold conferences, provide assistance, etc to a group of people within a certain diagnosis. They have no medical equivalent for what they offer.
In order to even access their on line conferences, they require you to provide detailed private personal and medical information. This includes but is not limited to full name, physical address, age, role (patient, caregiver etc), diagnosis (medical distinguishing type of), date of dx, stage, type of tx, status of treatment and more.
You CANNOT participate with them unless you provide all required information.
I submitted all of this extremely reluctantly. But had 2nd thoughts. I rescinded my permission for them to retain my data and therefore am unable to access any information or services or benefits.
They are DATA MINING people and to do so they coerce them to relinquish their HIPPA rights and protections in order to access information and participate with similarly situated co- suffers, IMO.
What are your thoughts?
Do you think this is a serious matter?
Do you think this should be prohibited regardless of whether HIPPA is construed to apply to them or not?

Interested in more discussions like this? Go to the Just Want to Talk Support Group.

Lori, Volunteer Mentor | @loribmt | Sep 30, 2023

In reply to @jennifer0726 "@rsfcowgirl I don’t know how to edit beyond that magical time period. It would be nice..." + (show)

Hi @jennifer0726 and @rsfcowgirl There is a magical period of about 2 hours to make a self edit. After that, a monitor can do that for you. Just click the 3 dots to the lower right and you’ll notice down at the bottom it says:
Report Comment

Click that and a window opens where you can report what you need changed. ☺️
Does that help?

rsfcowgirl | @rsfcowgirl | Oct 2, 2023

Update:
HIPAA is much weaker than many of us think. This was published in today's Medscape Oct 2, 2023 -

"In 2013, HIPAA was expanded to allow hospital fundraisers to access privileged health information, including demographic, health insurance, treating clinician, and data on outcomes. Atiq said since then, electronic health records have been used as tools to aide fundraising efforts. For instance, some healthcare organizations have embedded a feature inside EHRs to allow physicians to flag development officers when a patient or family member might be a potential donor.

Patients may be unaware that hospital fundraising departments have access to their electronic health records, or that they have the right to opt out of fundraising solicitations. "

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