Archive
Gimme My Damn Data – And Help Me Understand It!
I recently read a Computerworld article that discussed the reluctance of physicians to share patient data with the patients themselves. The article referenced a survey conducted by Accenture and Harris Interactive that found of the 3,700 physicians asked, only 31% felt that patients should have access to their own healthcare records.
“It found that 82% of U.S. physicians want patients to update their electronic health records with information about themselves, but only 31% believe patients should have full access to that record; 65% believe patients should have only limited access. Four percent said patients should have no access at all.”
This can best be represented by the following graphic from the Computerworld article:
This is old school thinking and is akin to asking someone to “show me yours and I will ‘think’ about showing you mine” (but probably won’t). How very one-sided.
When I first joined the Personal Data Ecosystem Consortium (PDEC), I did so because I believed that people should be allowed to take control of their own data. To me, “personal data” was roughly defined as identity and PII data; this was largely due to my identity background. But over the past year this has shifted towards healthcare data and while many of the same thoughts apply, the ROI on managing healthcare data can be much higher as it directly correlates to a person’s primary asset – their health.
Google Health, Microsoft HealthVault, CareZone – there is no shortage of applications designed to assist people in managing their healthcare data. While some efforts have failed, others remain hopeful. But as this survey demonstrates, there is still a long way to go to change the minds of those who are diagnosing and managing this data – the physicians, themselves. If they could only understand that patients are uniquely capable of assisting in the management of their own healthcare; but in order to do so, they need the data (and they need to understand what it means).
Over the past couple of years we have been developing applications that utilize the Lifedash platform. This allows our users to take control of their own data and selectively share it with others. Our latest application is CareSync and it is directly focused on healthcare. We are currently in a beta of the Web application and are piloting our Health Assistant services. Both of these offerings allow people to aggregate and manage their own healthcare in a collaborative environment but allows them to do it safely and securely. The feedback we have received from our participants has been overwhelmingly positive as people are losing faith in the healthcare system. They either want to (or feel forced to) take an active role in managing their own (or family’s) healthcare but to do so, they need the data.
With the reluctance of most physicians to share it is challenging at best. There are, however, techniques that you can use to obtain this information but it requires persistence (the word “nagging” comes to mind). It should not be that way - after all, it is our data.
In the words of healthcare activist e-Patient Dave, just “give me my damn data!” Or as I would add, just “give me my damn data, help me to understand what you just gave me, and tell me how I compare to others in my situation!”
The Dimishing Non-Digital World (or How to get Outed by a Photo Booth)
I recently attended a high school reunion where a major draw involved the use of a photo booth. You remember photo booths, right? Kiosks where one or more people hide behind a curtain and take pictures of themselves in all sorts of poses. At the end of the session, the kiosk spits out copies of the pictures much to the chagrin of those who aren’t quite as photogenic as they initially thought they were. In our case, reunion attendees were treated to an assortment of funny hats, glasses, and mustaches before entering the booth. They posed with silly expressions, engaged in silly activities, and in some cases even took silly actions to the extreme (I will leave that to your own imagination).
The point I am trying to make is that once the curtain was closed and the camera light came on people began performing in ways that would be considered unheard of in other settings. Adults who mere minutes before were prim and proper were now raving exhibitionists behind the privacy of a thin veil of cloth. When the curtain was once again opened, they returned to their “normal” behavior and giggled as they left the booth with memories in hand.
So why the sudden change? How did a thin piece of cloth make any difference as to how they acted? The difference was not the curtain, the difference stemmed from their perception of privacy and the context of the situation. People tend to act differently in settings where they feel their actions are private and when the context of the situation is known, they oftentimes let their guard down and act more naturally (or more boldly as the case may be). Just think about Congressman Weiner and his Twitter outing, Alec Baldwin and his fatherly advice to his daughter, or even conversations that you may have had over email, chat, or text when you didn’t think anyone was looking. When people feel more secure in their settings (privacy) and know the rules by which to play (context), they oftentimes act in totally different ways.
The problem with this behavior in a digital society is that you are never truely off the grid and it is all too easy for things to be taken out of context when information is shared inadvertantly. In our current digital society privacy is a facade as few companies take privacy seriously and there are fewer online places where your information is truly secure. Unfortunately, that can also be said of our offline world as more and more of it is becomming digitized as well.
Even within the sacred confines of a photo booth our privacy is not really private at all. Ironically photo booths now take digital photos which are then stored on the kiosk’s computer hard drive. While this expidites the printing process, the possability of those photos being shared with unintended parties is very real. At least that is what I observed shortly after the reunion when pictures from the photo booth began appearing on Facebook. At first I thought that attendees were scanning their own photos and posting them. This thought was immediately dismissed when I saw my own pictures start to appear.
From what I can surmise, the operator of the photo booth provided digital copies of everyone’s photos to one of the reunion committee members who took it upon themselves to post the pictures to Facebook. I am not going to get into the legal, moral, or ethical issues behind this action, but suffice to say, no notice was posted and no permission was granted. Now, I truly believe that those involved had the best intentions of the reunion attendees in mind, but the problem is that they did not have the right to make that decision on their own.
Intersection cameras, movies on demand (on any device), automobiles that act as WIFI hot spots, Internet connected scales, and yes photo booths – these are only a few examples of how every aspect of our life is becoming affected (or even consumed) by digitalization. All of that content is finding its way into the hands of people who may have good intentions, but who do not understand the ramifications that disclosure of such information may have. As such, they may not take the same care that you or I might take with our own information and may share it with others – all under the guise of good intentions.
So what happens to our privacy when our information falls into the hands of others? Is it even possible to assume that they have our best intentions in mind when their own companies make money by selling our data to the highest bidder? Can we assume that the context in which we operated is even valid when it may simply be a ruse to get us to let our guards down? Like Rip Van Winkle awaking from his 20 year slumber only to find a world that he no longer recognizes, we too must take care that we resist our own apethetical slumber or we too will wake up to a world we no longer recognize.
A New Generation of Indentured Servitude
Your digital identity is comprised of information that you volunteer about yourself and information that is observed about you as you simply participate in life. You can (somewhat) control the personal data that you share with others, but have you ever wondered about the type of information that is gathered about you, how long it is retained, and how it is used?
A friend of mine introduced me to a video that provides insight into these questions. It contains an interesting perspective on how your digital identity is comprised, collected and used.
It is interesting to note that almost four years of our lives is owned by someone else – and we willingly give it away. Does that make us indentured servants to those vendors who provide us “free services” in return?
The speaker makes another interesting comment at the end of the video,
The global Internet becomes the personal Internet and information ceases to be information at all.
I am not entirely sure that I agree with that statement; I guess it depends on who it is being made about. Unless we (the ones who generate the data) benefit in the form of better applications, streamlined experiences, or potentially even financial returns, then I don’t see it becoming a “personal Internet” at all.
In our current form of indentured servitude, we continue to give away pieces of our freedom in return for very little.
It is time to turn the model around.
Don’t Just Complain, Do Something About It!
A hopelessly lost salesman came upon a farm house where the owner was rocking away on his porch. Late and desperate to get back on the road he stopped to ask for directions.
“Take the dirt road in the direction that the sun sets; keep going until you go past the old post office. Make a left after you drive past the broken down tractor that them Taylor boys left a sittin’ there,” explained the farmer. “Keep a goin’ a bit more until you pass the old sawmill, …” he continued but was interrupted by his old hound dog who let out a rather painful groan.
“Aroooogh,” moaned the dog.
The farmer continued, “…once you get past old McGreevy’s farm, make another left, and …”
“Arooooooogh”… once again, the dog lets out a painful moan.
“Excuse me,” asked the salesman, “but is there something wrong with your dog?”
The farmer looked down at the dog, paused a second, and then replied, “Naw, he’s just lying thar on a nail”. ”Wait a minute,” asked the puzzled salesperson, “if he is lying on a nail, why doesn’t he just get up?” Without missing a beat, the farmer said matter of factly, “Don’t hurt enough to get up, just to complain about it…”
Moral: How many times have you criticized someone for how they are doing something? How many problems have you solved with your friends over beers at the local pub? How often do you feel like you have a better idea? Well, stop complaining about it and do something about it!
Remember: ”It is better to light a candle than to curse the darkness.”
Trust in Me
Trust in me, I’m the social media vendor providing this FREE service because I want to make you happy. I know that all of this infrastructure and the thousands of employees I have working for me are costing a small fortune, but I do this because I care …. I care about YOU!
Trust in me, I’m the software development company who develops these FREE applications because we are looking out for you. We know that you need something entertaining to do or something informative to occupy your time. We ask you questions about your preferences so that we can customize the software for YOU. That’s the only reason, trust us.
Trust in me, I’m a one man developer operating out of my house creating these FREE applications so that you don’t have to pay for the premium ones. I have no visions of grandeur for myself. I have no dreams of making money for myself, I am doing this for you!
REALLY? No catches at all? Awesome, where do I sign up?
I learned a long time ago that there is no such thing as a free lunch, yet people continue to be duped into believing lies to the contrary. Let me be clear,
Privacy is an illusion in our current social media landscape. Period.
If you think that these FREE services are free then think again; they are anything but. In fact, social media companies and application developers are making money off of the very things that are most precious to you – they are making money by selling information about you and your loved ones. Whether they are selling this information directly or indirectly through advertising, these entities are collecting thousands of pages of information about you – enough to fill volumes of books. Don’t believe me, read Kim Cameron’s article, 24 Year Old Student Lights Match: Europe Versus Facebook.
Your preferences, your habits, your activity – essentially your life – is meticulously tracked by social media sites and used to predict your behavior. With this information in hand, they seek out those who are looking to target those with this behavior or are willing to pay to gain access to these people. It is a well-known fact that social media sites may know more about you than your own family members do, but social media is not the only culprit. “Real world” businesses have been tracking your behavior for years and are just as savvy as social media sites (see How Target Figured Out A Teen Girl Was Pregnant Before Her Father Did). The amount and types of data associated with social media sites is much greater than that obtained in brick and mortar stores as it is more plentiful, easier to gather, easier to store, and easier to analyze.
In George Orwell’s book, 1984, we were worried about a Big Brother that we feel never came. In reality, however, he came and brought his whole family with him and they are all watching us. Get used to it, or take the steps necessary to protect your information assets the same way you protect the money in your bank or your legal documents.
Last month, I wrote a blog entry entitled Which Line Do You Want To Be In? in which I stated that people are
willing to trade important things in life for short term gain
Unfortunately when convenience and privacy are at odds with each other, people tend to throw privacy out the window in trade for convenience. Are these people oblivious or do they simply feel that they have no choice. Have they made a conscious decision or are they simply uneducated to the risks associated with privacy breaches? I tend to believe that most people are too trusting and do not know (or simply do not understand) what information is collected about them and what happens when their information is inadvertently shared. You can classify these people based on age and/or knowledge of technology as follows:
- Typical Kids – who do not yet understand privacy implications
- Typical Adults – who may understand privacy, but don’t understand technology and how it can affect their privacy
- Tech-Savvy Adults – who understand privacy AND take an active role in protecting themselves on social media sites
For those of you who fall in the third category, I know that I am preaching to the choir here, but unfortunately the vast majority of people do not attend the church where this message is being preached. There are still many people who have never heard the message or if they have, they simply choose to ignore it. Is it because they disagree that information is being tracked? Or is it maybe that privacy policies on most social media web sites are simply too difficult to read and/or understand and it is simply easier just to “click through” to get to the site that we want.
I once heard that marketing agencies build their message so that a person with a 7th Grade education can understand it. That is an unfortunate statement to the intelligence of the average American. Unfortunately, it is also a statement that many companies rely on when crafting their legal documents.
Suffice to say, if the price is FREE, it may be costing you dearly.
It Happened One Night
I used to be on the road quite a bit teaching classes or consulting with customers. While the cities were many and the customers diverse, the one thing that was always the same was my music collection – it went with me wherever I went (and continues to do so today).
I was in California on one such event doing work for Sun Microsystems. While listening to my Eagles playlist one particular morning, I was inspired to write this little diddy. The words just flowed and I finished before the first student arrived. I hope you enjoy reading it as much as I did writing it.
(Words are mine, songs are from one of the greatest bands of all time – The Eagles.)
So, I left the customer site last night and headed back to my hotel. You know, my HOTEL CALIFORNIA. It was late in the evening (as usual) and as luck would have it, I came face to face with an OUTLAW MAN in Sun’s parking lot (damn security). He asked me to hand over all my money, but as luck would have it, I had already been robbed that day – by my wife – the WITCHY WOMAN.
I told him to TAKE IT EASY as I reached for the few coins that I had in my pocket. He asked me IS IT TRUE that this is all I had? I responded, yes, there are TOO MANY HANDS in my pocket and he would just have to GET OVER IT. Thank goodness that he felt sorry for me (being the NEW KID IN TOWN and all) and felt that any further effort would simply be WASTED TIME.
When I finally reached the hotel, I found two PRETTY MAIDS ALL IN A ROW (my wife and daughter) and one lone DESPERADO – (my son) who was in trouble because of his LYIN’ EYES (I am glad that he is only three, otherwise he would have landed in a TEENAGE JAIL). My wife relayed her story to me and I to her. Her story paled in comparison to mine and she questioned, IS IT TRUE? (You see, she had caught me in the past CHUGing ALL NIGHT with the GIRL FROM YESTERDAY and she doubted my story)? To which I responded, I CAN’T TELL YOU WHY – IN THE CITY – there’s a HEARTACHE TONIGHT, but that’s what you get when you live LIFE IN THE FASTLANE.
As I look back over the whole event, and look at all the things on this earth that are OUT OF CONTROL, I had to laugh. Because in THE LONG RUN, LIFE’S BEEN GOOD, and even when you TAKE IT TO THE LIMIT, it is still just a GOOD DAY IN HELL so you might as well get that PEACEFUL EASY FEELING and LEARN TO BE STILL.
(Links added for your listening pleasure; not all songs available on MP3.)
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