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

@rsfcowgirl You have brought up such a thought provoking subject, and I have enjoyed the intellectual exchanges with others. I have no doubt the organization is legit as I know you vet things very well. My gut says they probably sell the data or data mining rights as an additional fund raising method that makes it “free” to people who can benefit by attending, that despite getting money from government or whatever sources, they feel they can provide even more by trying to sell sponsorships, advertising rights at the conference, and our data. I agree it just stinks, maybe not as much as the obvious snake oil salesman prey on the sick & vulnerable, but still makes us feel violated.
Colleen shared the humbling legal OK that allows them to do it, and how our laws aren’t able to micromanage every single group or agency, and that’s just sad too. I was on an airplane last week, and while my husband and I were willing to pay for the emergency row exit to enjoy more legroom, we did not because I know I’m handicapped and know I really wouldn’t be ideal to help in the event of an emergency, and I have been part of an emergency landing before! All 12 emergency seats were full, and one man had a neck brace on. On the other side was a very elderly couple, I’m guessing close to 90 each, they both walked very slow, were hunched over, and looked so frail. (please, I don’t want to judge books by their covers, but we can’t help ourselves sometimes) A man near me asked the flight attendant about the guy with the neck brace, and expressed his concern for emergency (he must have been afraid to comment on the frail looking couple). The attendant politely explained how everyone in the exit rows replied they were willing and able to help in an emergency , and that’s all they could do, but they would allow him to get off the plane and they would reschedule him for another flight if he felt uncomfortable. This situation was quite a debatable conundrum!
I agree with your feelings that not only are we preyed upon, we’re having to take huge risks with our privacy to get help, and with your IT knowledge you know the risk more than others. What I do know is that I’ve gotten at least 10 letters in the mail over the last 5 years explaining how my data had been compromised by breaches in various business systems, including medical. I applaud you for tackling this - if these organizations are that serious and sincere, maybe they can fund raise other ways than collecting our data.
You have both made me realize to think hard before sharing data and questing why, and to make informed choices in doing so. I’m also sad for those public safety instances that can’t have more safeguards when they need to be in place to help protect people. But attending a seminar is not one of them needing our personal data in my opinion.

First, I commend you for living a life of integrity. Double that when you have a disability and sacrifice your preferences for the unselfish standard of chosing to do what is morally correct. You and I are starting at a mirror point as we discuss issues.
My first issue with the organizations requirement for personal and medical information disclosure in order to receive freely available related medical information they discussion in is that it is an unreasonable demand, imo, which is exclusionary to some of the very people the non-profit disease- supporting org exists to 'help.'
There may be many reasons why they want to accumulate medical + personal data. Financial gain may only be one reason.
The real harm of this is how seriously this places a person/patient at risk. As you mentioned, data breaches happen more often than we even know. Beyond privacy risk, there are safety and security risks. Let's say data is breached by hackers looking for wealthy disabled and perhaps dying people. Literally, targeted victimization is fully enabled by the detailed information required by this organization, should this fall into malicious hands. Also, what if you didn't inform certain people of your medical problems and something comes in the mail to your required listed home address or substituted your workplace? Since we've learned here HIPAA does not apply here, what would prevent that if bad judgement was exercised? And the idea that it wasn't disclosed that the incentive with prize possibility to have your conference badge scanned by as many vendors as possible may be a process by which you are transmitting your personal data. Vendors are not even ethically bound to protect your interest or privacy if you directly + voluntarily share information with them. Who knows where all that information will end up.
However, I did have a subsequent experience recently subsequent to submitting that extensive information then rescinding it. I received a non-bulk letter that provided information about various avenues available to me to get reimbursement for pre-death expenses and funeral costs. This was not an insurance policy solicitation. It wasn't a reverse mortgage mailer. This was custom geared to me. It included govt options and other non govt resources. This was not a govt mailer either. There was no return address. I never received any like it before. Needless to say, it showed me the tip of an iceberg I'm likely now in the waters around. I immediately flashed on the option I originally checked for "treatment" from the mandatory pull down menu indicating "none" and wondered if this resulted in the generation of this letter, which had my legal name on it. Bottom line: we live in an information and digital age that has exalted itself over people, imo. I am becoming aware of many realities these days that I probably should have learned about years ago. I feel like I've been buried under an avalanche of harsh reality. Digging out ......slowly

I am certainly not Tech Savvy" so to speak, but I [along with so many elderly] realize the risks of giving out too much information. Sadly, there are SO many elderly that have no idea, and often "sign up" for things that lead to problems. They are taken advantage of; big time. My mother was one of those, and she lost most of her little savings. Most elderly worked long and hard for what they had/have. Even though it has become very common, I am still shocked at how willing some people are to take every last dime from innocent people, without a second thought about how they will then survive. Personally, the so-called protective privacy acts often cause problems for loved ones when they can't even get simple information in order to be able to help those that need them. Yet, as you have stated, there are those who DO get personal information, but for the wrong reasons. Sad. Hurtful.

I'm so sorry to hear what happened to your mother. The cruelty of some people is inconceivable. Some states have victim funds. I hope yours is one of them.
And it IS a counterproductive situation when laws meant to protect people are instead barriers when information is legitimately needed by essential 1st line relatives. I'm an 'older woman" and have not been riding the waves of radical changes in our world. I spent a few years of retirement in a shelter works of study, being submitted in classical music including hosting prodigies who were playing in my city, and refusing the house I thought I'd be living in thru my senior years. Now that I'm catch up, it's all a shock to my senses. Much happened in afew short years.... And then COVID happened. Now it's a whole new society.
I have a friend who I spent time with on and off. She seemed normal. Until the day she called telling me she won $5million dollars they Publishers Clearing House. Just 4 months ago. She wouldn't listen to me. Or a mutual friends. Or the cops who told her outright - "This is a scam." She was, and still is, certain the person who called her and told her that was legitimate. And she missed her chance to be a millionaire bc she didn't send through money in fast enough. She has no signs of dementia. She's highly functioning. But she can't see the fraud side of circumstances. It happens to so many good people. In fact, my new PCP sends out email Fraud Alerts to her Senior patients from law enforcement. I've been a victim too. Hugely. And I know I could be again. Because while we're living in the Age of Information, we're also living in the Age of Deception.
Stay safe. Y'all.

How sad, about your friend. There are too many just like her; trusting and vulnerable. It's the good people that get scammed. We want desperately to believe the world is as it was when we were much younger. It will never be like that again.

Reading this again, I see frequent replaced words for the ones I typed. It's a virus. This virus products word salad among other malfunctions. It's frustrating. S/b ' sheltered world", 'submersed in classical music" and "refurbishing "the house.

HIPAA only applies to "covered entities". If this organization is not a covered entity, then they would not have to comply with HIPAA.

@rsfcowgirl you can edit your post after submitting it by clicking the three dots next to your post. Often our phones or computers are set up with “auto correct” and that is where the problem lies. I believe on my iPhone I have disabled this function. Or, you can type your post first in Notes or a word document and then copy and paste here. Hope this helps. I know it is frustrating!

Hi. Thanks for the tech thoughts. I admire your knowledge and willingness to help.
First, my internet devices are limited to my cell phone and my tablet. That's my internet access. So typing is an ordeal. I'm keyboard fluent but there isn't one available with these devices.
I have autocorrect disabled.
The virus that is in these devices is the OMACP virus. I can't get rid of it.
I was told by IT that even stripping devices down to the factory reset won't remove it. Other lessor options have been tried. All ideas will be welcomed.
Because I use a fingerboard in a small device, is not feasible to write a first draft outside of the comment screen here.
I'm getting my eyes examined and a new lens Rx in a month so maybe I'll catch errors sooner by the end of the year.
One question: how can the post be edited after a while from posting? There is a menu option soon after posting but it doesn't offer editing to me beyond a certain time period.
Again, thanks for the tech tips.

@rsfcowgirl I don’t know how to edit beyond that magical time period. It would be nice if it were indefinitely. Your only option currently is to go back and check right after posting. On my phone there is an app called “Notes” where I can type something, and then copy and paste here. I have lost posts in beginning and that is why I suggest doing that. Best wishes.