Tuesday, May 12, 2015

Keeping Private to Protect My Privacy

Soon after my diagnosis I came to a level of acceptance of my diabetes that enabled me to open up to my circle of family, friends and colleagues.  This didn’t mean that I went around to strangers telling them my diabetes stories, but those around me who cared about me and needed to understand were aware.  But on the other side of it I have been perhaps somewhat paranoid about keeping things private.  In previous times the only people we knew in our social circles were people that were local to us, as above our friends, family and colleagues.  These were the people in our village.  But today, there is no village.  The internet has opened up and if you are public about something then the whole world can know it and there can be consequences.  If you don’t control your private information then your privacy can be invaded and you can be harmed. 

 So I’ll be talking about three areas where I have kept things private. 
  1. I have kept my work private from my diabetes social life
  2. I have protected my personal health information
  3. I have protected my personally identifiable information
Before I start into these topics, I will say that if you have met me face to face and enter my local social circle I will let you enter my private circle.  You can learn about what I do, my actual name, even where I live.  But if you are not in that circle I go to some lengths to protect myself.  In reality, what I am talking about is protecting my "privacy".  Wiki defines privacy a:
  1. The right to be let alone
  2. The option to limit the access others have to one's personal information
  3. Secrecy, or the option to conceal any information from others
  4. Control over others' use of information about oneself
  5. The idea of personhood
  6. Protection of intimate relationships
As I discuss the three areas where I remain private, please keep in mind these concepts of privacy because these concepts (in fact I would argue they should be “rights”) are the driving reason I make efforts to remain private.  And I would encourage everyone who reads this to realize that should you value these rights you should not willingly give up your privacy.

I keep my work and diabetes social life separate for a number of reasons.  Although I am nominally protected against discrimination it doesn’t mean it cannot happen.  I also need to make sure that any activities that I do in my diabetes social life don’t conflict with my work.  Depending upon your job this might either be trivial or very difficult to navigate, in my case work issues have been difficult to navigate.  Also, if your diabetes social network overlaps with your work social network you need to treat very carefully to not cause personal conflicts or harm the privacy of others.

Now, about Personal Health Information.  This is sometimes called Protected Health Information (PHI) (this is different than personal health information, more on this later) and is information about your health, coverage, health payments and any information associated with your health.  As a society, we recognize that PHI is something that we have a right to have protected.  This is why HIPAA was created.  It forces certain types of transactions and providers, insurance plans and employers to promise to protect our PHI.  But notice I said “certain types” and I said PHI, not personal health information.  HIPAA only applies to interactions with us as patients, it doesn’t apply to blog postings, forum postings on TuDiabetes or what we put on facebook.  What we post there is not covered by HIPAA.  And personal health information is a much broader class of information and includes all your personal health information that falls outside of the PHI class defined by HIPAA.  And this can be a lot.  The information collected by google based on what you search for.  The products you buy.  All this stuff is outside of PHI under HIPAA unless it involves some direct engagement with a health care industry.  This information can be used against you, to deny your health and life insurance coverage, make you the target of scam advertising and other things.  So I go to great lengths to protect my health information.  And besides, HIPAA is only a promise that organizations will “try,” the fact that their records are compromised so extensively gives one pause for thought on whether they should even be entrusted with our PHI.

And so on to the final element of my privacy concerns.  I broadly protect my Personally Identifiable Information (http://en.wikipedia.org/wiki/Personally_identifiable_information).  I don’t want anyone to know my real name, where I live, my children’s name or anything specific about me.  Why?  Because that information belongs to me and I should be able to control it.  And I choose to control it to protect myself.  Against what you might ask?  What about identity theft?  What about personal attacks?  What about spam?  I have had the same basic personal email for over 20 years and have to filter and wade through innumerable spam messages every day.  I won’t spend much time on this topic; I would encourage everyone to use “good hygiene” to protect their PII.  And that goes beyond just not giving out your real name and social security number, but realizing that people can “put things together” in ways that you simply cannot imagine.

More former "Identity" bsc
So what do you I do.  Well for quite a while I maintained anonymity by not using my real name, using an avatar, not saying where I worked or where I live.  You can see my former avatar, good old Alfred E. Neuman, many of you remember that face.  As part of becoming more active in TuDiabetes as an administrator I needed to stop being an nameless face and be a real person.  So I now use my real face as an avatar but I only use my first name. But I still don’t tell people where I live or work or details about my family or their names.  You might be able to find some personal information about me but you will have to dig a fair bit.  I think all of us would be safer in this dangerous open world of social media if we took care to not carelessly divulge our personal information.  If you give it away you can lose control of it.


  1. I have been Type 1 for 35 years, but two years ago started low carb and have seen amazing results. Take a look at my blog and maybe we can learn from each other as we go:)

    1. Thank you commenting on how low carb has helped. I started nearly 10 years ago with a low carb diet and it is the central part of my diabetes management. I still harbor some "issues" about my dramatic and constant conflicts with the healthcare system over low carb diets. I'll check out your blog, but I would also hope you can check me out as "Brian (BSC)" at Tudiabetes and as "bsc" at diabetesdaily and diabetes-solution.