Tuesday, October 4, 2011

Support Websites - When Rankings Outweigh Privacy

My website has been in existence for several years now. I have numerous other groups all concerned about HPV and dissemination of information regarding awareness, education and vaccination whose links I have placed on my site and visa versa. We all look to help each other in what is one of our main goals - to educate as many people as we can and provide them with as many reputable sites that may help to facilitate this.

Unfortunately this hasn't been the same with one particular site. I have praised the site for the support connections it has allowed women (and men) to make and the great strides and award winning status it has achieved and I have more integrity than to call them out by name.

However, I have never been happy with the fact that people's posts are, by default sent to "share with the public", an action which places that post and all subsequent responses on the Intenet which can NEVER be removed. One may think that it is no big deal, people have screen names. Simply put many peoples circumstances especially when you are indicated where you're from etc in your profile may divulge just who you are to someone reading your story, screen name or not. Many people are just as concerned about replying to such posts which only lessens the support that individual gets all because they didn't see the box which asked them to make a choice before they hit POST.

I've been told when I informed people of this that it wasn't my place to do so and that if people had chosen their post as public it was probably because that is the way they wanted it. Nonsense! I've spoken to far too many of these people who said they never realized that is what they were doing and thanked me profusely for letting the know.

What this does and what they have acknowledged in their reply (unless they've deleted them) is that having posts go to the Internet makes their site more accessible. This is true because it boosts their site ratings every time a post gets picked up by the search engine spiders (as they're called) as linked back to the site.

My response to that is that there are certainly other means by which to utilize SEO (search engine optimization) to increase market share while still maintaining people's privacy. So, despite my significant following on their site, my account has now been banned with the following explanation:


We have removed your account as we have received notice today that you
are again contacting people via messages to promote your site. We have
repeatedly asked you not to do this as it violates our guidelines.

My profile page has contained my website email address and website and blog info almost from day one so why should this be an issue. This particular reference was the fact that I utilized a "passthrough" link (through my site to another) to get people to the most current HPV related guidelines. What bothers me most is the utter hypocrisy. Dozens if not more members of this same site list their blog links, Facebook links to sites they have created yet they continue unhindered as a member.

Why would someone with such a successful site need to create guidelines that prevent others from listing links (which dozens of people do all the time) yet my own are off limits? I noticed several people leaving blog links so several months ago I did the same and was chastised and had that post deleted while others have continued to post their blog links totally ignored. I've been told they simply "weren't aware" of these other breaches in their guidelines". If you believe that one, I've got a bridge to sell you too.

One must ponder the question, why if getting this information out is the ultimate priority why they would attempt to maintain their members like cloistered nuns unable to make references to the "outside world". My site is certified by HONCode for accurate medical information and certainly SHOULD BE no threat to this wonderful site but that's the way it certainly seems. Self promotion for someones EBay business for example would certainly be inappropriate, but referral to a site with the same intentions?

Just keep in mind when joining any forum or looking at any site to check if they are approved by HONcode (something I don't think this site actually is but I could be wrong). I simply never recall seeing their logo on the site. Is your information valued as well as your privacy or are the most intimate details of your personal life spread about the Internet for the purposes of making a site more accessible. More accessible also means higher rankings and the ability to charge higher rates for advertising and the like. Is this the way you want YOUR private information utilized?

If not, then send a message loud and clear that your personal information is private and should remain that way by default. That obtaining as much accurate information as possible is important to you even if it means visiting other sites to do it and being able to pass along valued links to other members is important to you. In addition you can choose to leave. Don't worry you won't be abandoned as there is a place where you can exchange this same information without fear of it being sent to the Internet and where your privacy comes first!

The HPV Support Network Forums will be active on Friday October 7th and anyone wishing to share their information without fear of disclosure or limitations on what information you are being allowed to have is not an issue here. We value your privacy above our rankings and can find other ways to make our various sites (Website, blog, Facebook and Twitter accounts) accessible without stooping to these tactics.

It is my personal opinion that there is perhaps nothing worse than being used and manipulated at a time when one is so vulnerable.