I just wanted to remind people about a couple of web oriented facts.

As you all know we ask people here to use a screen name and not their own, we ask that you do not post in the open forums you phone, email address or any personal contact information. I want to make sure that all the new people have an understanding of what we can and cannot do, and why all this is.

This is being prompted by a discussion I had yesterday with someone that has finally realized that the Facebook support group that they post to is carrying their real name, and in their case, people in their lives that they did not wish to know about their inner feelings, their physical situation in detail etc. now do. Facebook is certainly not private. More than that, it is not free. It never ceases to amaze me how people seem to not get that Facebook is a multibillion dollar enterprise, built on SELLING PEOPLE'S INFORMATION ABOUT THEMSELVES TO OTHERS. Oh some of it seems quite benign, they target your timeline with ads from people that have bought your information from Facebook, and have something that they think you might buy. For instance my timeline is full of aviation things, as that is pretty much the only personal thing I have in my profile there. But they sell their lists to anyone that wants to buy with little discretion, credit reporting agencies, insurance companies, big employers and so much more. What do those people do with the information they are buying? I'll leave you to think about the many, many things that the world knows about you from Facebook (not all of which is benign to you), all the big search engines that catalog every search you've ever made, and who also cover the entire world wide web in detail with web robots (spyders) that gobble up every thing ever put on it, and catalog it all regardless of perceived value. Those big search engines are not free either, they sell everything that they have learned about everything to anyone with the money to buy it.

So while we worry about whether or not the government NSA is spying on us, interacting in our modern world in a normal way, all these publicly traded companies likely know much more about any of us than our government does. And this is the way of the future, this genie is out of the bottle, and our smartphones that we all love so much are not things which we are not going to give up; after all who doesn't like the instant access to knowing about something by doing a Google search, or have your phones location capabilities give you a walking path in a strange city to the store that you wish to go to? Even my Nest smart thermostat in my home talks over a wireless connection to my phone, and is routinely in contact with the manufacturer exchanging data with them, getting updates to its software, and more. Nest was recently bought by Google�. who now knows when I am on vacation ( well I don't take them but in theory) when I leave to work and when I come home, and other minutia of my daily life and physical location.

So I am telling you all this because it is the real world, and in most cases things that appear to be free are really not. I want to state something that I am very proud of, and that is OCF has never, and will never sell our mailing lists or any information we know about anyone. Oh we get asked all the time, and we could certainly use the money, but I have had it written into our corporate by -laws that it can never be done. So unlike Facebook, this forum is actually free. And if you are careful about what you post, your identity will never be known to anyone, not even those of us here at OCF. This makes it a safe place to be honest, and get real usable, actionable help. You may get an email from OCF about something but not from other entities or individuals.

This does not mean that the posts here are not wandered over like everything else on the web by search engine spyder web robots, they are. But it matters little since those of you that care about privacy, use a unique screen name and you do not post in the open forums your personal information that identifies you. The search engine spyders cannot get into the back end of the forum software that contains your profile, nor can they get into your private messages. We have people try to get into OCF almost everyday, by registering to this forum that have malicious intent, to sell you something to gather your data. But every night and every morning we find those individuals and we ban their IP address, and their access to the forums and the ability to contact others here. It's a tedious task, but it has to be done to protect you.

I just wanted to make this clear. I am a very visible person as a spokesperson for OCF, my name what I do for the foundation and patients around the country, where I lecture and so much more is all out there, so I don't really care that my real name is here. You should.

Brian: well said, and all valuable advice. I've never been concerned that any of my personal information would be leaked to anyone here at the forum; this is additional comfort.

It's a huge topic of course and you've nailed a lot of it. For myself anyway I find Facebook stupid and time-consuming. I tried it for maybe 6 months. I know it's habit-forming and for many people incredibly involving. And that it can be helpful in business, etc. Just doesn't add up for me.

Many try to take steps to mitigate the borrowing/theft of our personal info online. Anti-virus, spyware blockers, etc. I also recently installed a shareware program that (allegedly) blocks third party sites from grabbing things from you when you visit web pages. At the moment the counter is showing only one request on this page as I type, from Google. So that's a big plus for OCF. By contrast, when I open up CNN dot com, for one example, the counter hits 50 within 30 seconds... and goes over 100 within a minute or so. Jeesh.

All of this will make you crazy. But I'm glad you guys are on the job, as always. Thank you.

Another thing you can do is to dump your cookies once in a while. In Mac's that are running Safari as the browser, this is really easy, and you can go in and look at the cookies individually. (You will see three from OCF) But when Chester taught me to do this the first time, I went into do it there were more than 9,000 cookies collecting data on me in my browser. (WTF?) Many of them were likely benign, many of them were collecting info about me that when I went back to their site, would get downloaded. (You can't know which are which and you should just dump them all and let everything pile up again.) What amazed me ( remember I work on the Internet much of my days researching and more) that a week later I had several hundred cookies in there again. OCF's cookies only remember you and what you have already viewed on the forums, we don't have access to them because we didn't design them to be data collectors for us� what would a small non-profit do with that information if selling it was off the table? But ours do make your experience here better, they remember what you have read and what you have not, which when there are years of postings from others and your own, is useful. They remember that you have a password and are allowed to be here. But collect data that we download? No way. Unfortunately OCF is in the minority here, and most are not like ours. But this is the real world of the web, and if you set your browser to not accept cookies, some sites won't even work for you at all. In Safari you can also ask cookies to "do not track me" which the ethical companies honor, the others do not. Cookies and tracking is part of the Internet. There is no way around it except to clean them out all the time, or to not browse the Internet, which in the information age is not a choice really.

Again, good advice. I use Firefox on a PC and I sometimes go through the cookies and delete any but for sites I visit a lot. I suppose I'm thinking that I save time in retyping access names and passwords and what not, although really I should heed your counsel. Many thanks again!

On a Mac, passwords are not stored in the cookies to auto fill or whatever, they are kept in the keychain app and only when I log on to Facebook and Paypal right after dumping my cookies do they not remember my ip address of my computer and ask me to re authorize my computer to sign in again. The really malicious stuff comes from sites that curious people eventually check out with lots of images of people with less clothing on than more if you get my drift. And malicious sites have cookies that have names that you will not recognize, by design. So OCF, or the NY Times have cookies that say just that, others, well not so much. But for sure if you dump them all your world will not be noticeably different, which the first time I did it really surprised me. I was sure something world quit working.

Hey Brian,

Since you started this, it must be OK to pile on. There is 100% trust in this site not giving up any private info on members, that is certain. Beyond the bounds of this site though, the amount of personal information gatherable and gathered is mnd-numbing. The war has been lost on privacy and 90% haven't a clue there was a war.

As you say, how can google and facebook and many other sites be worth billions of dollars. The information they collect on every person is amazingly valuable to every type of business trying to target and profile you. It is boggling to think about how much technology and service are "given away". Those personal profiles about you are worth a HUGE amount.

As to cookies. Maybe in the old days it made a difference for more security but cookies are more an aid to the user than anything else. Nearly all the data that is collected is done real time. Every time you press enter, that payload of data is captured and processed.

I have worked in IT for several decades and have seen it all happen before my very eyes. The genie is out of the bottle and there is no turning back. The only hope I see is if individuals can wrestle control over their digital persona and privatize it. Then rather shared by default, nothing gets shared unless by exception. Of course, if this were to happen the cost of all digital services would skyrocket. The question is will people be willing to pay up to protect their privacy. I have my doubts.

I agree completely. The Internet and availability of information is changing our world� Hell it makes OCF's long reach and big footprint possible because we were early adopters of this means to effect change as a small entity with far too little funding and human resources to have an impact on oral cancer and those touched by it. If the Internet was not free, it would create an even greater chasm between the haves and the have-nots. It would impact the very core of how things get done today vs 20 years ago, which would have far reaching financial impacts on world economies not just internet based businesses. For all the negatives that we have talked about, the positives far outweigh them. I am willing to give up some privacy for things like Khan Academy to exist. For those of you who are not familiar with how this simple idea that started in one man's home is changing education for both rich and the poorest of us you should Google it and read about it. Kahn is the very best of the opportunity incarnate. This forum is only technology, but when you couple it with caring knowledgeable people, look what happens. People make better choices at a critical point in the lives, anxiety is reduced, camaraderie grows. Technology has allowed the purest part of the human spirit to reach across the world.

That does not mean it is without an equal amount of bad. Misinformation, hate, lots of negative things live on the Internet. We just have to be good filters, and approach all this with a prudent, eyes wide open, mind set. Hence the need to have this conversation with the new users of the board occasionally.

Interesting Brian that this should all come up just as I'm reading about the potential for damage, well, catastrophe might be a better word, due to the Heartbleed Bug. From what I'm reading I just want to bury my head in the sand. Or maybe go back to my 1985 Compac dual floppy drive computer.

What Saul Khan is doing is fabulous. There are hundreds of incredible examples of the Internet enabling wonderful initiatives pushing positive good to the peoples of the world.

The discussion has focused on privacy and not sure why I am advancing the discussion of loss to of freedom but what the hell. Even great than the loss of privacy is the loss of freedom or at least the ability to restrict and control the freedom of the peoples of the free world.

Simply, now that virtually all parts of our lives are directly or indirectly affected by technology, what happens when the controlling group, whomever that may be, elect to take control of the technology. Everything from access to funds, access to information (i.e. the Internet), access to communications (i.e. cell phones), etc. etc.

It is beyond imagination what the intended AND unintended consequences are going to be to free societies as we know and enjoy today. sorry for painting with such dark colors today.