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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
First, this was a medical diagnosis- based-conference. In person and virtual. There is no allocation of resources issue. They are a funded non-profit for this medical condition. They chose not to charge money for watching a conference and giving same-diagnosed people + others the ability to connect if they wished to. There is no comparison to govt services you compared this with. You WERE REQUIRED to answer EVERY PERSONAL AND MEDICAL QUESTION in order to register. They are not healthcare providers! They are an information and support NGO.
In fact, the 'fine print' stated you also release your information, publication of your image ( if captured at the conference or on Zoom ( Zoom was previously the app) and more. And without compensation or permission required.
Yes, l communicated my outrage directly and informed them I withdraw permissions for retention +/or sharing of any + all of my data inc that which may be held in 3rd party databases. I expressed to them exactly my position as I stated here. I added I recognize they do much good but they demand too much in exchange --- submission of extensive personal+ medical data, some of which goes to 3rd parties.
What my view is that they are compiling a database for their own general disease- specific research as well as compling for a pool of potential subjects for emerging medical trials. But whatever the reason, I object to being required to disclose extensive personal and medical information AS A REQUIREMENT to view a medically related informational conference on a medical condition by a non- profit group that's open to the public. It's unrestricted, unlike some actual medical conferences for medical professionals which only require your name and license, or other purpose such as media. HOWEVER, you MUST submit all their required information. You, Sue, are free to have the view they have the right to proceed this way. I don't agree because they are funded and function as an NGO- a medical non profit - tax exempt- agency. I believe they overreach their purpose, and the manner in which they do it, imo, is coercive and imposes unnecessary obstacles to access of information, which is their mission.
This referred situation is SOMEWHAT analagous to being required to submit a detailed form starting w name, DOB, street address, dx, date of dx, stage + type of tx before you can read the article posted on this forum by the Mayo Clinic Dr on the Glimmer of Hope for PASC ( Long Covid) and read and respond to the posts of others. Even this is not an equivilent analogy is because Mayo Clinic is a MEDICAL entity. That makes all the difference.
Replies to "First, this was a medical diagnosis- based-conference. In person and virtual. There is no allocation of..."
@rsfcowgirl, I agree that collecting all this personal data and medical history should not be the price of admission to said organization's event. That is your information and should only be requested voluntarily. So often organizations buy customer management software/systems (CMS) to build databases of their customers so that they can add them to mailing lists for marketing or other purposes. These CMS tools allow organizations to create forms to collect any type of information. But just because they CAN create a form with a wide variety of fields to fill out, doesn't mean they SHOULD create them. I hope your response to them makes them more aware. They should at least make the information voluntary. Thank for advocating for respect for patient privacy.
I want to clear up about data collected on Mayo Clinic Connect. We do not collect personal and medical information on this site. This is by design to protect patient privacy. You do not need to fill out any information to read the article by Dr. Vanichikorn here:
- Glimmers of Hope: Post-COVID Syndrome Research https://connect.mayoclinic.org/blog/post-covid-recovery/newsfeed-post/glimmers-of-hope-post-covid-syndrome-research/
In fact, you do not even need to be a registered member of the community to read it.
To join the discussions on Mayo Clinic Connect, you do have to register. The only information required is an email address and then you create a password and username (which can be your real name or a nickname). Again, this is by design to protect patient privacy and to make sure that registering is quick and easy so that people have few barriers to asking their questions and getting support and answers from fellow members. Even filling out the member profile is optional. While it is nice to see a picture with a name, we do not oblige people to provide a profile picture or bio or any medical information.
I hope that helps clarify. And thank you again for being aware of your data and your right to privacy.
PS: I just dealt with a similar situation with my daughter where her landlord was asking for personal banking and social security information to which he has no right. It was an important lesson for a young person to learn. Just because someone asks for data about you, doesn't mean you have to give it.
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I reiterate that, however distasteful their policy is to you and me, they are not violating any laws. As long as they disclose their policies in advance there is no fraud or deception involved. As long as they are not one of the groups covered by HIPAA, they are not governed by its requirements.
NGO's and non-profits, even those organized around a health condition, or possibly receiving government funds, do not have any special restrictions under the Internal Revenue Code or other Federal regulations, except as may pertain to how they use a specific grant or source of funding.
If you are convinced this needs to change, you might wish to begin by consulting with one of the many privacy rights advocacy organizations to find out how you can help initiate new laws or regulations.
And we can respectfully agree to disagree on this matter.
Sue