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Privacy and control

Brian
  • By Brian
  • Posted August 27, 2008 at 2:40 pm · 48 replies
  • Shared with the public
7 Recommendations

At Inspire, we think about privacy all the time. Virtually every web site has a privacy policy; you can read ours here: http://www.inspire.com/about/privacy/. But simply following the letter of a privacy policy falls short, we think, of treating people the right way. We do follow the rules we describe in our privacy policy, but we also try at all times to behave ethically. We think that this boils down to two things:

a) You, as a member of Inspire, should be in control of your personal information and how it's shared.

b) We will never try to trick you.

The first point, about being in control, is what I want to take a moment to discuss. If you visit your privacy control panel, here, https://www.inspire.com/account.pl?op=privacy you'll see a grid of all the things you can control. We've chosen the default settings based on what we think is right, which means, essentially, 'how would I want a member of my own family to be treated?'. Now, the key to this page is that you can change your own settings anytime and as often as you want. One of the improvements we made to the site in March was to increase the number of things you can control on this page. For example, we didn't previously allow you to hide your age, because we thought it was better for you to be discoverable by other members looking for friends in the same age range. Most members agreed with us, but a small number objected strongly. So, we changed that.

The second point is not meant as a joke. I myself have accidentally shared more than I wanted to online when I was confused by a site, and I'm a pretty savvy user. In that case, I'm not entirely sure it was an accident. At Inspire, there are numerous examples of improvements we've made to our pages in order to reduce confusion. We have learned that not everyone is confused by the same things. So we design our interface to respect our members. This means being easy-to-use without being patronizing. A lot of thought goes into that, and we're always improving.

What do you think? I'd love to know how you feel about privacy -- what to share, and what not to. I'd also like to know if you find that our privacy settings give you the control you need.

Thank you,
Brian

Posted in:

34 groups

Explore topics in this journal entry and replies:

Heart disease Cancer Surgery Sudden cardiac arrest Falls Confusion Gastroparesis Cervical cancer Ovarian cancer Pain Bladder cancer

48 replies

Ecksunbeam

Dear Brian,

I am very pleased with the changes you have made. I don't know about the other groups, but WomenHeart has found their way around the block and our group is cookin'.

I think the privacy default is "public." One night I googled my screen name only to discover that every discussion I have ever started has now gone out onto the WWW. Gulp! I don't really mind because I'm just posting integrative medical information for heart disease survivors, but others might want to take a look-see if this is something that concerns them.

Thank you for your continued efforts to upgrade this site.

flowershoplady

thanks for asking for our feedback, brian!

i strongly believe that the default should be that everything we post and everything about us is private, for members only, so that it can't be easily googled or found by other search engines. my guess is that most members don't realize how easily their discussions about personal/private subjects can be read by just about anyone with access to the internet. if someone wants to make it more publicly available, then that can be the 'option' to select.

also indirectly related, i think it would be very helpful to be able to edit a posting. currently we can only delete it. we may decide, after we hit the 'submit' button, that we don't feel comfortable with everything we just posted, and our only way to change that in the current system is to delete the whole entry.

and, one more suggestion....before the changes in march, we could see all the postings that an individual had made, whether or not they initiated the discussion, and i think that was a valuable function.

thank you for all your efforts in making this site available to us, and continuing to make improvements!

Peter

Ecksunbeam --

I am glad you like how the site continues to evolve. As Brian said, we spend a lot of energy trying to improve the site, and to do it the right way.

Just to make sure there is no misunderstanding, let me outline the default privacy settings. The only privacy-controlled items that default to "public" are your screen name, and your profile photo. Email address defaults to no-one, and everything else defaults to members-only:

Privacy Default Settings:
Profile pages: Members only
Screen name: Public
Profile photo: Public
E-mail address: No one
Location: Members only
Age: Members only
Gender: Members only
About me: Members only
Inspiration: Members only
Relationship status: Members only
Favorite links: Members only
Interests: Members only
Group list: Members only
Friend list: Members only

While we hope that people will feel comfortable enough to share of themselves, and thereby inspire others, we regard these privacy controls to be nothing less than a cornerstone of this site.

If you (or anyone reading this) has any questions about the privacy settings and how to use them, please don't hesitate to ask, as this is a very important feature on this site.

Best Regards,

Pete.

flowershoplady

peter, you wrote that only the screen name and photo default to public, but i've seen that the content of the discussions and journals default to public unless the user indicates otherwise. is this not the case for all the communities under the inspire umbrella?

Peter

flowershoplady --

Ah, right, thanks for pointing that out, the content of each discussion and journal also defaults to public, and can be set at the time of creating the post. Additionally, the author of a journal or discussion can go back and change this value for their post at any time, by editing the post, and changing "Share with" value. (To edit your posts, click on the title, then click the Edit link.)

The problem with making everything that is posted default to private is that this would surprise a lot of people, who expect that when they make a post, it is visible to others. If the posts defaulted to private, a great deal of the useful and interesting content on the site would never be seen by those who need it!

(I missed those settings because I was looking at the member privacy page.)

Regards,

Pete.

heartscriber

I personally am not too keen on the fact that my city AND State are on view. I would much rather prefer to get to say just my state or just USA and not have my city listed at all.

Thanks for listening...otherwise a great site so far!

:)

heartscriber

Also, I might add that people should really think before they put personal info out there. Right now in another thread, someone has their home phone number listed!

I know it is up to the individual...but that's just a friendly piece of advice...

chewy1

I agree that privacy is very important and some things should not be made available for everyone to see. I have found the controls available on this website to be very adequate for me.
I make sure when I am posting a discussion or reply to one that I do not say anything to identify personal information that I don't want to share. However, I have developed friendships with several people in my group and we correspond through the "friends" link or personal e-mail. A few of us have exchanged address and phone numbers also so we can check on each other when someone hasn't been on the site in awhile. Maybe this will backfire on us someday but I seriously doubt it. I think the people we have really connected with have given us all much needed support and we all genuinely feel like friends to each other.
I personally like the age to be shown too. I like to know if I'm talking to someone my age or someone much younger. Our experiences in life can be so much different at different ages so if I know I'm talking to someone much younger that the way they see things may be totally different than me.
I think though that if someone isn't comfortable with making information available they should be able to keep it from public view.
chewey1

DrD11

Hello.
Upgrading Inspire,is a positive step in achieving the
goals of this organization of S.C.C.A.
Privacy is one cornerstone in this organization.
The other cornerstone is, sharing information.
The opportunity to share experience,feelings and ideas.What is lacking is a feedback of the organization
to new ideas and follow up in that respect to the "State of the Union" of Sudden Cardiac Arrest and
Death.This is a Public Matter,more than Private Matter.

Stacey67

The only thing that bothered me was, I did a Google search on my own name and my e mail or yahoo im id, and found that a post that I made on here was there for the public to read and access very easily, and i deleted that post. Since then I haven't posted anything else. I just don't feel like every person that uses the internet should be able to do a search on my name or email address and find out all of this information. I don't mind sharing with members of this community, because most of us are here for similar reasons. But the general public does not need to know everything about me by doing a simple Google search! Other than that, everything else is wonderful here! I am thankful to be able to communicate with other people with similar issues and interests! Thank you for that!

TeamInspire

heartscriber,

You can make your location private here:
https://www.inspire.com/account.pl?op=privacy

Hope this helps,
Beth, TeamInspire

TeamInspire

Stacey67,

If you would like, we can change your screen name to something more generic and not identifiable. You do not have to share your email address and can be completely anonymous. To request a screen name change, go here:
https://www.inspire.com/account.pl?op=screen_name
Hope this helps!
Beth, TeamInspire

flowershoplady

beth and peter, you've now had several of us posting the same comment....we're not happy to find out that the content of our postings are so visible via simple internet search engines. if individuals here think that the only way to keep our discussions out of the general public eye is to take the discussions into private email discussions, we lose the main idea of this website which is to be able to share and learn from one another in a forum setting. having our name anonymous is not the same thing as keeping the discussion private. when we're discussing very personal details of our bodies and lives, we don't want it 'googled', regardless of whether our name is attached to it or not....it's the content of the discussion that is personal and private. and, peter, i still don't understand your comment about people thinking their postings are visible and then they're not....if one indicates 'member' vs. 'public' then it's visible for anyone who takes a moment to sign into the community with a logon id and password which are available to anyone who wants to enter the community. as i said earlier, i feel very strongly that the default should be that all discussions and journals are for 'members' only rather than public. and, as you've seen in these postings, several of us have indicated the same concern. hopefully inspire will take this into consideration. thanks!

loonym

You know it's kind of funny, I've always been an intensely private person, even to the point of paranoia. After I got my diagnosis, which btw is stage 3 inoperable bladder cancer, privacy started to rapidly move down the list of things that are really important to me. Kind of cool how quickly priorities changed when faced with my own mortality. I've been a member of numerous groups on the web over the years, ranging from usenet to forums to irc and even a known scene release group, and stayed on the shadowy fringes of the internet. I still am a member of several forums. I really haven't been involved with or researched this organization enough to provide much direct feedback as to how it's conducted but it seems alright for my needs at this point. When I introduced myself back in April I also made an almost identical post to a bladder cancer group on yahoo because I was devastated and just wanted to get it out in whatever places I could. That post was rejected and I'm going to quote that email right here and now for reference...

" 'Hello,

Your message to the Bladder_Cancer group was not approved.
The owner of the group controls the content posted to it and has the
right to approve or reject messages accordingly.

In this case, your message was automatically rejected because the
moderator didn't approve it within 14 days. We do this to provide a
high quality of service for our users.

A complete copy of your message has been attached for your
convenience.

Thank you for choosing Yahoo! Groups

Regards,

Yahoo! Groups Customer Care' "

At the time, I was furious and very hurt. I'm somewhat isolated and really don't have much interaction with people except my 20 month old daughter and I really needed those posts and hopefully the replies. No forum is perfect but as near as I can tell this one does a pretty good job of being what it's intended to be. Thanks for letting me be a part of it and keep up the good work. Jon


edit: I'd like to add, anyone truly concerned about privacy needs to keep in mind that the internet is about as public as it gets so proceed with caution ;)

TeamInspire

Just to clarify, when you post a discussion or journal you can choose "public," "members," or "friends." Yes, the default is public. Which is something we discussed a lot. In our old communities, there was no choice at all and everything was public. The benefit being that being "googleable" allows people who are just diagnosed to find the site and discussions that are important to them. We realized that not everyone would want to be "googleable" and made it a choice in this version of the software.

I'm sure we will re-visit it again in the future as we continue to evolve the site but for now we believe this is a good compromise.
Beth, TeamInspire

loonym

You're absolutely right Beth imo. I think it's important that people can get search hits for these groups. When I was searching for a place to find people with a common problem it was a rather desperate time for me and I'm glad those threads and posts were public. Thanks once again for letting me share this forum. Jon

kareno

I do not like that all of my thoughts and personal info is out there for all the world to see! I thought that only members would get this information. The PUBLIC should not have any of my personal stuff available to them. If this is what happens, I will not be posting any longer. I will continue to belong and read the posts, but will not feel comfortable responding. With this info available to all those on the internet, it makes it uncomfortable to be open and honest about our feelings. If the default is that it is public information we need to change it. I agree with Stacey 76 and Flowershoplady that this is not acceptable. Would someone tell me how to google myself and find my posts so that I can delete them? I am a very private person and this is the first time I have EVER shared my personal stuff with my friends here, only to find out that I have shared it with everyone. I am now sorry that I did! This is the first I knew about this and am highly upset. Please get back to me about finding and deleting the information. Are our responses to other posts also visible to the PUBLIC? If so how do we change that? I love this site and have learned much. I have only responded sporatically, and now wish that maybe I shouldn't have. We should be able to keep what is said here just for members. If someone is looking for information, they should find help with just our name "Womenheart". This gives an indication of what they will find here. Upsetting!!!

TeamInspire

Kareno,

Yes, if you reply to a discussion or journal in which the author has chosen to share with "public" your responses can be seen.

When you post you have the option to choose "Friends," which is those people you have added as friends; "Members," which is all members of Inspire; or "Public," which is anyone who comes to Inspire whether they are a member or not.

I checked and your profile information is viewable to Inspire members only.

Let me know if you have more questions!
Beth, TeamInspire

Gwen1

I'd like to chime in on the google discussion. On of the reasons I don't post in this forum except to post educations information is becuase I don't want my personal information out there for everyone in the world to see. I belong to other lists that are not visible unless you are a member. In that list I'm a lot more likely to be open and frank. I seriously doubt that people find this list by googling peoples names. So I don't see that as a valid argument for making it searchable. They can easily get to the site via the OCNA website if they are interested. I agree with the comment above that people not feeling free and comfortable to air what is really on their mind and so are taking their discussions to private email exchanges is a real indicator that the site isn't function as was intended.

TeamInspire

Hi Gwen,

I don't think they are googling anyone's name. The context of the discussion is what shows up in searches. For example if someone searched "ovarian cancer" or "just diagnosed with ovarian cancer, what can I expect?" That is what I mean and a growing number of people, like loonym above, find the groups that way.

Beth, TeamInspire

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