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The HIPAA (Health Information Portability and Accountability Act) came into force in 2003 - nearly ten years ago. It refers, as I understand it, to medical information termed PHI (Personal Health Information)which is collected, collated and held by entities. These entities are obliged to allow the individuals to have access to this information while at the same time protecting their privacy.
The Yana site, on the other hand is merely a convenient place where individuals can waive that right to privacy by choosing to publish the details of their health information to everyone who has access to the Internet. That is their choice and is not a breach of the regulations.
David Pattison posted this on March 7 2012 under the heading Our Information:
My wife was looking for something on Goggle and put my name in. It came up with "PC survivor" and then gave my whole history on yananow which I have put on here as an adviser to other people. All the world can read about my problems through this illness.
I thought as a mentor confidences would apply how wrong am I? I am due to update my history but frankly do not know if I should. My parents are still alive and we did not tell them of my problem, hopefully no one who is computer literate will either. Is there any way we can take it off Google?
The issue here is not simply one of Google and David’s story being accessible, so I thought I should spell it out in greater detail than I have on the site and in this thread on this Forum.
1. Anything that is published on the Internet – that is to say, stories like those on the YANA site and other like it; messages posted directly on Forums like this; contributions by e-mail to ListServs or Message Lists – anything and everything is likely to be found again by a persistent searcher.
2. Search Engines – and Google is by far the biggest, but is not the only one – will hunt down and find this material. As an example. If I put Terry Herbert into Google it will show over 30 million references. Most of these will refer to Terry Herbert the man who found the treasure or to Terry Herbert the magician, not to me. Put my name into DOGPILE and you will get fewer and somewhat different sets of markers. So persuading Google to delete a reference (which is possible provided you can give the specific URL – webpage address) does not address the problem of the other thousands of search engines.
If you change the Google query to Terry Herbert Prostate Cancer you will still find 306,000 entries. Although I have been busy over the past 15 years, these are not all referring to me by any manner of means but some of the entries refer to posts I have made to Forums or where other people have referred to me in their postings.
Using your real name at any time means that what you have posted in that name is traceable to you – and that includes where you have used an e-mail address that identifies you. Put firstname.lastname@example.org which is one of my addresses into Google and you’ll see all manner of posts in all manner of places, most of which identify me.
3. The item here your name appears may not be in the original site but it will almost certainly be cached somewhere on the Internet. I have deleted many stories over the years. Some at the request of the men concerned, others because the men have not updated their stories. There are probably as many of this as there are current stories, but all these stories can be found in at least one caching site which holds multiple series of the site as it was over the years. I have no authority to delete these items. The man concerned could almost certainly have them deleted by invoking the HIPAA (Health Information Portability and Accountability Act) legislation because they do not have permission to publish this information. BUT….you’d have to find the data first and then find the owner or operator of the site.
So the moral of the story is that if you’ve put out any personal details on the Internet they can be found by other people who have the time and patience to track it all down.
You can backpedal to a certain extent and the simplest way of doing this is by using a pseudonym. Some of the men have complex user names 2BukChuck comes to mind, but the simplest thing David could do would be to change his name to something like Don W with his wife Dahlia and no one would ever find his story. His e-mail address is not one that is easily linked to him personally, so he’d be pretty well protected.
Regrettably, David’s posting has led to a number of people asking me to remove their stories. I have asked them to reconsider – to keep their experience but to change their names and I hope they’ll do that. ALL experiences are valuable to those who come behind us and it is possible to share these and remain anonymous.
Re: DON'T USE YOUR NAME.......also OUR INFORMATION
From the time I first posted to this site 6 years ago you've been very clear that the information posted is public and that we should be aware of that. I used my real name in my story but that was my choice. I figured it would help people realize that this is just part of life and if I've helped a few people over the years it was worth it.
Re: DON'T USE YOUR NAME.......also OUR INFORMATION
As you say David it was your choice to use your name, but for many people there are some risks in doing that. Workplaces are sometimes very hard on people they see as being a potential problem for example. So we are always happy to post stories with pseudonymns as well as those where full names are used.
Thank you for maintaining your updates which are so important especially for newly diagnosed men - and congratulation on your Silver status
I have been a Yana Mentor since 2011 and using my name has not been an issue. (Knock on wood) The information provided in the forum and survivor stories has been invaluable to me and to others. Yes there are unscrupulous characters trolling the internet. I have never been worried that someone might find out that I had prostate cancer and somehow use that against me. I suppose they could but I would rather share my experience and knowledge to help others than to keep it hidden out of fear. Of course using an alias makes good sense on the internet these days but if someone wants to find out who you are then there is not much you can do to stop them. Anyone that would exploit those suffering from cancer have no class or dignity. Some lines you just do not cross.
I am new to this site and I see that I put my full name in a post yesterday.
Can I change this so as not to see my full name in the post? Any help you
or anyone else can provide will be greatly appreciated.