our posts are indexed globally

l7pla1w2

This is a meta-post about the things we post on this discussion group.

I try to pay a lot of attention to my privacy online, and I've felt comfortable posting here because I believed it to be closed and safe. Then it occurred to me that web crawlers and indexers can probably gobble up posts here, because the posts are public, even if responding is restricted to members. I don't know why it took me nearly two years to figure that out.

So, be mindful that your posts can be seen by anyone. I was going to ask the site admins to limit access where possible, but then I realized a web search might be the first way caregivers discover our group, and I think it's important to continue that access.

Chris20cm

I discovered the same thing recently, there is no privacy here. I did a search under my name and found a very personal message I posted here about family difficulties and not getting help. It was kind of a rant, so I am going to avoid that sort of thing here except maybe dm's by mutual agreement.

Timmyd

I have had a career in various aspects of computer science for over 35 years. My approach is to imagine any electronic message I send (text, email, message board etc) will be read by everyone in the world. If I am not comfortable with that, I adjust the language or look for a different way to communicate.

I have seen people run into big problems at my job which could have easily been avoided by just assuming everyone in the company will see your email.

Dio

How is this possible? Aren't we using alias for our name here?

Timmyd

https://alzconnected.org/discussion/comment/252532#Comment_252532

All of your posts are public. I assume all of my posts have been scraped and set aside in someone's hopes to find a way to monetize them in the future.

Figuring out the person behind the post requires some work and is beyond the capability of most people. However with advancements in AI, those capabilities will become increasingly available to a larger segment of the general public.

annie51

I don’t know a way around it if we want to get the input from all who participate in the forum. Using aliases, not saying specifically where we live, or not giving out too many other details is all I can think of doing. PMing is fine for personal messages but doesn’t help if you want global advice. Sad that we even have to think about this!

GothicGremlin

Thank you for starting this thread!

I'm with @Timmyd . I thought long and hard before creating a profile here, but I eventually decided that I was in way over my head with my sister's Alzheimer's/FTD, and I needed good information on these diseases, so I broke down and created a profile. I try to limit the personal information I post here, from the email address I use, to my name, and where I live.

It's concerning to me that there isn't a privacy policy on the alzconnected site. Or, if there is, I couldn't find it.

I found the Alzheimer's Association privacy policy - it's here.

It took me awhile to remember the name of the software company that put together this iteration of alzconnected, but I found it in some of my old comments on this site (April 2023). The company is Vanilla Higher Logic and their privacy policy is here. Here's what they have to say about social media and data sharing:

Social Media

The Websites use interfaces with social media websites or Software Services that are owned and/or controlled by other entities, such as Facebook, LinkedIn, Twitter, Google, YouTube and others (“Social Media Sites”). If you choose to “like” or share information from a Website through any Social Media Sites, if you are a member of a Social Media Site the interfaces on our websites may allow the Social Media Site to connect your website visit to your Personal Data. The information that you share with the Social Media Sites will be governed by the specific privacy policies and terms of service of the Social Media Sites and not by this Privacy Policy. You should review the privacy policy of that Social Media Site before choosing to access and use any Social Media Sites, including interacting with our pages on those sites.  

You can opt out of some of the data sharing.

LearningCurve

https://alzconnected.org/discussion/comment/252585#Comment_252585

Disheartening. I try to use the most ridiculously long, complex pw's. But yeah, "the internet of things" is a doozy.

l7pla1w2

@GothicGremlin: How can you opt out? I've avoided Facebook, et al., precisely because of their data sharing.

GothicGremlin

To opt out of advertising and some data sharing for the Alzheimer's Association go to this page. Do a "find in page" - on a mac (using firefox) "find" is under "edit" at the top of the page. Do a "find" multiple times on the Alzheimer's page to find all of the opt-outs. There are several of them.

On the Higher Logic page, it's near the bottom. You'll see this paragraph:

Higher Logic does not sell your Personal Data. However, we may share your Personal Data (including your contact information and your browsing activity) with social media platforms, including Facebook, that will use that information to serve targeted advertisements on the social media platforms and third-party websites. We do not control and are not responsible for the social media platform’s processing of your Personal Data. You can opt out of such marketing through Facebook here and you can contact us with any additional questions by e-mailing privacy@higherlogic .com. 

Right below that paragraph are instructions for how to opt out if you're in California. Californians have more privacy rights thanks to legislation that was passed there a few years ago.