Privacy and control

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

By TeamInspire
Posted September 1, 2008 at 2:00 pm
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Hi CJ,

We are required by law to confirm that all members are above 13-years-old so that is why we ask for birth date. Also, as some members have commented above, they want to talk to people in their own age range. If members choose to share their age, other members can search based on that. Same with zip code.

That said, you can update your privacy to not show your age or zip code to anyone if you choose:
https://www.inspire.com/account.pl?op=privacy

We have added a lot more control to your information since the version you joined 2 years ago. In that version, all posts were public you had no choice to make them members or friends only. You also had to share age & zip code.

We received feedback from members that they wanted more control of those things and changed them as a result.

Beth, TeamInspire

By CJA
Posted September 1, 2008 at 1:54 pm
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Brian,

Why are we required to fill in our birthdate. What if I don't want to put that info out there for anyone. And why do we have to put in our zip code, for what?

I come here to read and to participate in discussion that I feel I can contribute to. Does my age and zip code really have any value here. If I have anything useful to share then some information seems less important to me.

Never a wiser man than to know that age has little to do with a wise man or woman.

So much has changed here at Women's Heart it's hard to believe that this is the same site I join 2 years ago. I'm not so sure that all of the changes are for the better. Everyday privacy becomes less and less everywhere you look on the internet. We need to be so very careful when making changing without at least asking those of us that come here what we think before it becomes a reality.

An ounce of prevention, a word to the wise?

CJ

By liznj226
Posted August 30, 2008 at 12:05 pm
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The "www" refers to "world-wide-web" and it is basically that. Whether it be a post, an e-mail, an instant message or a picture, once the "post" or "send" is hit, it is possible that the information can be picked up by any hacker. Your information is travelling through space and can be connected with along the way so if there's information you don't want out there, keep it off the computer and learn how to "control" your computer by setting your privacy settings on each site. There are always default settings but you need to review those settings. Also, if you ask a site to "remember me" when you sign in, anyone that signs on to your computer can access your sites and your information. Log out after every session if this is a concern or if other people use your computer.

As for postings on these sites, I don't give out any personal information so I feel if there's any part of what I've written that can help someone else then there's nothing wrong with it. The same goes for when I'm searching for information. If something in one of my posts can help someone else, then what's the harm?

By JoAllison
Posted August 30, 2008 at 11:58 am
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I've only set select parts of my profile to non-public, and one of the things I appreciate most about this site is that the posts are public. But then I've long been a member of a mult-faith discussion site & learned from there that posts are public and to be choosy about what/how much I post. It's just a function of being on the Internet.

One of the things that disturbed me when I was initially diagnosed was that there was so little real practical day-to-day advice out there. Part of the reason I post what I do is so that someone newly diagnosed can find it and not feel totally alone. Whether I'm posting about my daily frustrations or about something I found that helps me, I like to think of it helping someone else down the line in the future. It keeps things from being totally scary when you realize that you aren't alone. That's a gift I can give to people I don't even know. (That's part of the reason I started a blog shortly after getting the gastroparesis diagnosis.)

Personal opinion, of course. I realize that everyone is different and don't mean to denigrate anyone else's feelings in expressing mine.

Jo

By Noreen6
Posted August 30, 2008 at 9:43 am
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Thank you Brian for your thoughtful consideration and request for feedback about our privacy. I feel strongly that "members" should have access to what we choose to provide. I get enough unsolicited mail, that I don't want spammers to have an opportunity to use this forum to get any personal information. Hmm the age thing...lol..in this case I think it is appropriate to state your age, as noted by your comments that sometimes people are looking for someone their own age to discuss options, illnesses and to be quite frank, the younger generation does have a lingo of their own, which might lead to frustration in trying to communicate. I do appreciate the care, concern and thoughtfulness that goes into this website.
Regards
N

By Reenie
Posted August 30, 2008 at 3:34 am
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I'm not sure if I'm chiming in too late, because it seems that the problem was taken care of (or perhaps I took care of it myself by going back in and changing some of my posts to "members only".)

I admittely was very distraught when I typed in just a few words , that my post in this forum showed up as number three in google! Gulp! While most of my doctors have been great, I admittedly was expressing bad experiencies. I checked google off and on, and finally went in and edited my post to "members only". It took almost a week for it not to show up with the two search words I had been using. Now, it doesn't show up. For that, I am thankful. I am not sure if it was my "Edit" and it just took awhile, or if changes have been made.

I truly believe that "members only" should be the default, and the "public" should be a choice by the poster. Just my two cents, but in the meantime, I have become hypervigilent............

By loonym
Posted August 30, 2008 at 3:19 am
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In general on the internet it's not always an easy matter keep sensitive personal information private and the wise take great caution. But for people to post in a public forum and then become indignant because search bots gather it is a bit over the top.

By amw327
Posted August 30, 2008 at 1:07 am
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There are so many members on this forum that if asked probably wouldn't care if their responses could be googled and would benefit the public searching for help,however there are also several members that is does bother and that do not want to be googled and have their responses to a post and personal information shown up on google so why can't the forum compromise?

By Rose5
Posted August 29, 2008 at 9:07 pm
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Doesnt bother me if people can read what I write as all medical information, no matter how small can be so valuable to so many people...

Stay safe all

Rose
x

By TeamInspire
Posted August 29, 2008 at 7:56 pm
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Hi Everyone,

Thank you very much for your feedback. We'll discuss all the options and review all the suggestions and comments we've received to try and come up with a solution.

Beth, TeamInspire

By simplynat
Posted August 29, 2008 at 6:13 pm
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I never realised that if I decided to post a reply to a thread that the author left public meant that my response too would then be public. I strongly disagree with this. I think it should be the members choice what he/she feels comfortable sharing with the world wide web. Some of our topics are EXTREMELY personal and I am saddened that many of us will likely not want to participate in certain threads simply because the author left his/her question open to the public and we are not left with an option of keeping our responses within the members of our group. Very unfortunate decision by the Inspire team.

By TeamInspire
Posted August 29, 2008 at 5:15 pm
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lkay,

When you post a discussion or journal you can choose "public," "members," or "friends." 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

By TeamInspire
Posted August 29, 2008 at 5:13 pm
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Kareno,

I think it would be a shame if you stopped posting but only you can decide what you are comfortable with. We all need to feel comfortable with the information we share on the internet.

Beth, TeamInspire

By lkay
Posted August 29, 2008 at 4:28 pm
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Beth and all,

I tried to read all these replies, but gave up. Can't you make the default for "members" and not public? I try to remember to change that but NEVER check the status if I am replying to other members.

It would make me feel better and I'm sure a lot more people too!
Thanks
Laura

By kareno
Posted August 29, 2008 at 4:03 pm
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Beth, No one ever said anything about it being public before. Maybe we are all just becoming more computer savvy. I am not happy with the very personal, sensitive posts being public. I guess I just won't post anymore. I would think our welfare and feelings here at WomenHeart would be the most important focus. I know we lost quite a few of the people when the change-over happened. (I stayed because of the friends I have made) We will probably lose more now. I know the internet is tricky, but knowing what I do now I will have to be more careful with what I say. I feel like I must really sensor my thoughts and responses, if I make any at all. Kareno

By TeamInspire
Posted August 29, 2008 at 1:47 pm
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Kareno,

This is not new since your group became part of Inspire. Inspire is the same as ClinicaHealth. Brian posted when Inspire launched that it was just a new name. Same company, same people.

In the old version, all posts were public. There was no choice. With Inspire, we give you the ability on posts you author to make them "public," "members," or "friends."

Yes, if you reply to a post that the author has chosen is public then it too will be public.

Beth, TeamInspire

By kareno
Posted August 29, 2008 at 1:29 pm
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Even if I place my information to members only, does it still go to public info because the default is public? I also have no control over my responses if the post I answer is not for friends or members only. This only gives me one option. Do not post any longer. I am disappointed that this has come up. I thought we were a closed group of friends sharing information, thoughts and "feelings". It is the thoughts and feelings portion that I do not like shared. As I have said before, I am a very private person. I am not ashamed of having heart disease, but I have other things that are sometimes difficult to share. I have only started to do this after 6 years, after feeling secure here. Now I find out that it is NOT secure. Why wasn't anything about this brought up when Inspire took over? I am curious about what Mystic (CJ), Ellen, TexRose, Tina, and Jaynie think about this new development. I often read their posts and value their perspective. Ladies, what do you think? Inspire hasn't made me feel better about this situation with their answers to our questions. Kareno

Welcome to Inspire!

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