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What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.

Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.

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Privacy and control

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

Related links from BCAN

Researchers are looking for bladder cancer survivors to complete a telephone survey. Click here for more information.

Newly diagnosed
Information for those newly diagnosed with bladder cancer from BCAN.

Bladder Cancer Basics for the Newly Diagnosed
Download or order a copy of BCAN's patient handbook "Bladder Cancer Basics for the Newly Diagnosed" free of charge.

Clinical trials
Get information about clinical trials and BCAN's Clinical Trials Matching Service which is offered at no charge.

Women and bladder cancer
Information about women and bladder cancer from BCAN.

BCAN's glossary (PDF)

BCAN's November Patient Forum in San Francisco
"Understanding Bladder Cancer: A BCAN Patient Forum"
San Francisco, CA
Saturday, November 7, 2009
9:30 am - 2:30 pm
The forum and lunch are free, but pre-registration is required at www.bcan.org or 888-901-BCAN

Presentations from BCAN's May 2009 Patient Forum
Presentations and slides from BCAN's most recent Patient Forum in Cleveland. Those diagnosed with non-muscle-invasive bladder cancer will be most interested in Dr. Jones' and Dr Pohar's presentations. People diagnosed with muscle-invasive bladder cancer will be most interested in Dr. Gong and Dr. Gilligan's presentations. Dr. Campbell talks about improving outcomes in bladder cancer patients, and Dr. Hansel talks about the importance of pathology in diagnosing, staging, and deciding on treatment for each patient.

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