Privacy Concerns

[SometimesCrazy]

Hi I'm sure I am being overly cautious but I have a question or two. Who is available to see these posts? I've been seeing the posts/push about volunteering for medical tests and now the Ocrevus poll. I just want to know that any information thru this website stays here and is not given to any drug manufacturers...well anybody. Thank you!

[Raingrrl]

Hi @SometimesCrazy! I can't speak about how the data here is handled but as someone who was in tech for 30+ years I can tell you that you really have little privacy on the internet. Here you are using a pseudonym so no one can connect what you write to the actual you unless there is something in your profile that does. On the internet, we are tracked by many entities who use the information in various ways. If you use Google to search as an example, you are tracked.

Honestly, I'd be more concerned about the data breaches we read about every week. Those are much more damaging.

[SometimesCrazy in reply to Raingrrl]

I don't know if I am concerned. Hence the questions. I am curious though.

[kris1973]

SometimesCrazy This is a great point. Same goes for the Q&A webinars/seminars being held on on Facebook. I don’t mind my name being out there but assume there are others who would. -Kris

[greaterexp]

I have messaged someone in admistration to address these concerns. You bring up a great question!

[Fancy1959]

Thank-you greaterexp for being on top of SometimesCraSometimesCrazy'-s concerns. To be part of the Spacid

[MS_Indestructible]

I think that Raingrrl 's answer pretty well answers your concerns but maybe greaterexp will get a better answer for your concerns. I am concerned for my privacy as well. This site does not require much personal information only what you choose to share. Facebook however,... I am very careful on facebook as to what I share are say. Hope you get your answers. ~terry

[Jesmcd2 CommunityAmbassador]

Here you go SometimesCrazy ,

support.mymsaa.org/site/Pag...

Everything here at My MSAA Community is held with the up most privacy!!

Otherwise it wouldn't be a safe place to fall.🤗 and I wouldn't be here.

I do suggest you lock your posts, and they stay right here.

Any polls you take are held in confidence by whoever gives them.🐯

I hope this helps😀

J🌠

[Iona60 in reply to Jesmcd2]

How do you look your posts? Are they public posts otherwise?

[Jesmcd2 CommunityAmbassador in reply to Iona60]

When you post something Iona60 it asks you at the bottom,

Everyone, or Only Followers in My Community. To keep it just in this Community, make sure you check the,

*Only Followers in My Community* 😊

J🌠

[Iona60 in reply to Jesmcd2]

Couldn't find that option for replies. Guess if you reply to a public post, your reply is public?

[Iona60 in reply to Jesmcd2]

I don't get it. I thought that everyone means everyone in this community and followers are the people that have chosen to follow you.

[Hidden in reply to Iona60]

Lots f people are the members of different hubs if you have multiple conditions and related/associated illnesses. Any members of the public can see you what you had posted and which other illnesses you may have based on what you had left your 'trail' behind, which to me, is highly personal information.

[kris1973 in reply to Iona60]

Iona60 So did I. I once locked my post by mistake and the one reply I received said it was hidden and that only I could see it. I assumed that was bc I only had 3 followers (hint...hint...😂) so I changed it to public then I received more replies from members in this group. -Kris

[Iona60 in reply to kris1973]

I just logged out and could see everyone's posts, but couldn't hit like our respond. People with pictures can clearly be identified. I think that is go back and lock my posts by editing.

[Hidden]

i find that it is a very valid concern. I often wondered why we do not have the option to keep our posts private. It's an invasion of privacy. Even The Facebook wouldn't consider allowing. Wonder if it's actually illegal, even. This is a health site, hence it is highly sensitive and personal topics that are discussed, not everyone wants the entire public to see what you are discussing. It does concern me.

[Raingrrl in reply to Hidden]

Hidden How is it an invasion of privacy, let alone illegal, when you aren't using your real name so it is very remote, maybe not even possible, to connect it to the real you? You also voluntarily participate in this forum. No one forced you to reveal anything.

The U.S. data privacy laws are lax except for California and maybe one or two other states. Europe and Canada are much stricter but I don't know if they would apply here. If the posts are stored in a database here in the U.S., then U.S. laws might be the only ones to apply. My job required me to understand the relationship of these laws to the customer data I worked with. When we obscured the person's name and manipulated other PII (Personally Identifiable Information) we could do whatever we needed to with the data and any of our many thousands of employees could potentially look at and use the data. 99.99% did not because they wouldn't actually have been granted access to it and wouldn't know how to find it even if they had access to the databases where it was stored.

Here is a quote addressing the myths about what the U.S. HIPPA law covers related to health data:

"Myth: HIPAA Laws Cover Privacy and Security for All Medical Records

This is partially true, but only under certain circumstances.

Healthcare providers, healthcare facilities, and sometimes insurers are the only entities bound by HIPAA.

But there are many others who may have that information, and they are not obligated or regulated by HIPAA. In the past few years, dozens of web applications have become available, many for free, that invite patients to upload their own health and medical information, usually for storage purposes. They claim that these PHRs (personal health records) become convenient and available in an emergency when stored in this manner. And so it would seem they are.

But these organizations are not under any restriction from doing what they want to with those records, even if they claim the records are private and secure."

[CalfeeChick CommunityAmbassador]

Just came across this post and thought I’d put in my 2cents worth. I’ve always tried to keep my personal info personal. Hence, I never put my real birthday on any website. It may be off by a few days or years. We have a Post Office Box and don’t give the street addy unless we absolutely have to, many of you known me as Calfeechick or Lynn and that’s just fine because neither is in any part of my legal name. I had read that if you receive mail frequently addressed to someone else at your residence That it was possible someone might be trying to steal your identity. So I spent $30. and joined a site called TruthFinder to look that person up. Found him living less than a mile away. He had said he was related to my mother in law, that he had lived here for many years! He had personal info on me back as far as 1984!! I reported him to police and they could not find any crime he’d committed. Found him on Facebook also. I have his info and his wife’s now. Next time I received mail for him I hand delivered it to him with a threat. Every time you’ve entered an event, magazines etc your info is shared and out there. Because I’m older and security didn’t used to be such an issue, I opened my checking account, credit cards, etc. using the name Lynn and still use them. I’m gradually changing things to my legal name and even that is a hassle because they don’t like to know how easily I opened accounts. Guess I got in more than my 2 cents worth. Be careful, it doesn’t take much for anyone to look up your home, your work your income and relatives. Guess I’m grateful for that icky ex-husband that tried to ruin me a long, long time ago.

[Juliew19673]

I think always being skeptical on line is best. I have my credit locked with all credit agencies to be safe. Great question by the way - thanks!