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!”
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.
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.
While it brought billions into Facebook’s coffers, one could hardly call the first day of trading a success. They opened at $38/share and ended up the day at $38.27 (a gain of less than 1%).
The only reason why their stock didn’t dip below the opening price was because they were being propped up by bankers who poured in millions every time the stock threatened to go below $38/share. In fact, the stock price was a flat $38/share a mere 30 seconds before the closing bell before the bankers once again jumped in to help save “Face”. (See “How Facebook’s Bankers Saved an IPO, Kept Shares Above $38” for more information.)
They say that people vote with their pocket books. Based on first day of trading, Facebook is ready to be voted out of office. Is this indicative of social media sites, in general or are people getting tired of Facebook?
My daughter said something quite profound when I told her about what happened. She said, “Dad, it’s just a web site. People get tired of it and they go elsewhere.” Wow, so Facebook may be subject to the same fate suffered by mega-giant portals like AOL, Yahoo, and Netscape? Maybe that’s why sites like Pinterest are trending upwards while Facebook is trending down.
Is it possible that people are getting tired of Facebook not adding anything more to their life than just a time-suck?
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.
Do you use Facebook? Since over 700 million people do, the odds are pretty high that you fall in this category. Are you concerned with your privacy and want control over who sees your content? Have you taken all the steps necessary to keep your private information private and feel pretty good about yourself? Well think again. While you may be taking every precaution to keep your data private, some items (such as your photos) are totally open. Still feel good about yourself? Keep reading.
Let’s say that you are on vacation and decide to take a few pictures to memorialize the trip.
You want to share your pictures, but you only want to do so with some of your closest friends (you don’t want these photos to be public). So, you select the upload photo option, point to the picture on your local computer, make sure that the Friends option is selected, and click Post.
The picture appears on your wall where only you and your friends can see it. You verify this by viewing the audience for the picture as follows:
Your friends comment and you all get a big laugh from the picture. But one of your not so close friends thinks it would be funny to show the picture to someone else – outside of your friends community – without your permission. Now, they could download the picture to their local computer and upload it somewhere else, but that takes too many steps – Facebook makes it much easier for you to be compromised.
Simply click on the image to open Facebook’s photo viewer.
Now right-click on the photo and select “Copy Image URL” from the browser menu that opens. You will have copied something like this:
If you look at the URL, you can see that this image is not hosted on Facebook’s site. Instead, it is hosted on Akamai’s site (a place where your privacy settings do not apply). By simply knowing this photo’s URL, anyone in the world can see this picture. All your “friend” has to do is share out this URL and all the time and efforts that you have taken to be private are now out the window.
Don’t believe me? Try this for yourself. Or simply click on the link above to see a picture that I have supposedly made private in Facebook.
Having my identity located in so many different databases is like wearing multiple watches
You never really know what time it is!
We had to put our family dog down.
Princess Buttercup of Petersburg was my daughter’s first real pet and as my daughter grew so did Buttercup. For the past twelve years we celebrated life’s events and Buttercup was right there with us, every step of the way. Birthdays, holidays, even more pets; we could look back through our memories and there was my daughter’s best friend, a part of the family, celebrating right there with us. And now there is a hole in our hearts and lives where Buttercup used to live on a daily basis.
The sorrow that gripped my family was intense and each of us dealt with it in a different way; but it seemed to hit my daughter the hardest. She withdrew from the family and seemed to want to deal with the death of her friend on her own. At least that is what I thought until I saw my daughter’s Facebook status.
I read her words and they literally tore open the wound that I had so carefully closed the previous day. As I fought back the tears I suddenly realized that my daughter had not withdrawn, she had simply found a way to share her pain in a way that I could not and she chose to use her social network to do so.
Don’t get me wrong, I also wanted to say something about Buttercup, but I struggled to find just right words. It seemed that every carefully crafted message that I wrote was quickly dismissed as I considered each one inappropriate for one group of friends or the other. I wanted to confide in my closest friends but not share with a general audience. I wanted to post something that would honor Buttercup’s memory, but I didn’t want to deal with the awkward questions or the “I feel your pain” stories that were sure to follow as people felt obligated to respond to my post. So I simply said nothing wishing that Facebook truly had some way for me to selectively share my feelings with my closest friends. But on Facebook, you are either an open book, or you are forced to take your business elsewhere? But where? They have already cornered the market on all of my friends.
My lack of saying something made me question if I truly shared in my family’s grief. But my wife did not rush out to post either so it made me wonder if this is a generational thing. Are today’s youth able to post about every aspect of their lives while we still like to compartmentalize ours? Are the concepts of context and roles breaking down as everyone has access to the same information about you? Should your clients be privy to the same information as your family members? Does that draw them closer or push them away?
In 2010, Mark Zukerberg declared that privacy was no longer a “social norm” and that user information should be public. This was largely based on Facebook’s observation of the types of information that people were sharing with each other. As such, Facebook modified their privacy policies and subsequently their platform to share more and more information. But there are some things that I simply don’t want to share with the entire world. So my only options are to either adopt Facebook’s open model or suppress my activity on the site. Thus far, I have chosen the later, not because it is what I want to do, it is only because it is the prudent thing to do. Some people are comfortable sharing everything with everyone, some are not. But while I was struggling with the right words to say, my daughter was saying them.
What I find interesting is that there is an entire generation that has essentially become open books with both their feelings and their personal information. While older folks value their privacy, it seems like the younger ones are more open to sharing. Is this because they agree with Zuckerberg’s view on privacy? Or is it that they simply do not have a choice and they must play by someone else’s rules. I contend that it is the later and people are willing to exchange privacy for convenience in a world where they don’t have both. Facebook takes advantage of the fact that humans are social beings and the drive to be social is stronger than the drive to be private or simply careful. Most “Millennials” are OK with this and don’t give it a second thought – that is until their openness is taken advantage of and they are compromised in some way. Then they scream about how this could have happened and why they were not protected.
In the case of Buttercup’s passing, my daughter chose to play by Facebook’s rules and share her feelings with the world. Did she consciously make this choice, or did she simply use the only tool available to her express her feelings? Does she value privacy as much as us “older folks” and would she have chosen to use another conduit to share her grief if it were available? Ah, there’s the real question, but it is one that is impossible to answer until she has real alternatives to choose from. Ultimately Facebook will face more and more competition (think Google+) and some competitors will place a higher value on privacy than Facebook, but they have a lot of catching up to do. As Facebook continues to grow larger each day and as they approach an impending IPO that will put them on par with companies like General Electric, it is going to be more and more difficult for competitors to capture the intellectual capital that so many users have elected to invest in Facebook. Can competitors erode Facebook’s market share? Only time will tell, but in my opinion, it is about time.
I was having a conversation with friends the other day and while it may sound nerdy as hell, the topic was focused on identity. I swear (trust me) that no drinks were involved but the conversation went pretty deep, nonetheless. What is identity, how is it used, and how can it be protected? Like Aristotle and Plato before us, we modern day philosophers discussed the various aspects that make up our identity, how we can control it, and how we can selectively share it with our intended audiences. In an era when our private information has been unleashed like the proverbial opening of Pandora’s Box, how can we regain control of our identities without impacting our existing relationships or experiences?
But what about identity? What is it really, and why should you care?
When I think about identity, I think in terms of aggregation, management, and sharing. Each of these are key ingredients when it comes to users owning their own identities, but each of these can be further strengthened when we add trust to the mix. So, what is the recipe for success as it pertains to trusting identities in cyberspace? Let’s take a closer look at each of these ingredients to see.
My identity is the aggregation of all the things there is to know about me. One could trivialize this by saying it is simply all the discrete data elements about me (i.e. hair color, height, ssn, etc.) but in essence, it is much more. It consists of my habits, my history, my data, my relationships – basically everything that can be me and everything that can be tracked about me. Identity information is not found in a single location, it is distributed across multiple repositories but this informaiton can be aggregated into a virtual identity – which is essentially, me.
When we allow someone to manage their own identity, we are allowing them to control their discrete data elements, but we are also allowing them to manage every other aspect about themselves as well. You can change your mobile number attribute (data element) when you get a new phone, or you can change your address attribute when you move. But just like you can remove the cache, history, and cookies in your browser, you should be able to maintain your privacy by removing (or hiding) your identity characteristics as well. Identity management simply means that I am able to manage those aspects of my identity that are my own.
In real life, I have the ability to select which characteristics and/or information about myself that I want to share with each of my friends, family, co-workers or acquaintances. My work-related benefits stay private between my boss and I in the workplace. Conversely, I don’t share my family conversations within the office. Investment information stays private between my broker and I, yet I Tweet favorite quotes to the world. In essence, I selectively share information with different audiences based on the role I am playing at that time. Online personas facilitate the same selective sharing within the social web similar to our interations in the real world. I may take on a different persona as I interact in the virtual world and elect to share different information with each audience based on where I elect to use that persona. This also means that I can act anonymously if I so choose (which is similar to going ‘incognito’ in your browser).
Sharing data with others fulfills my desire to communicate information about me to you, but just like in real life it is totally your option to accept the validity of that information or not. To take the sharing to the next level (and address a major need on the Internet today), we need to have some method of trusting the information that we receive. Trust is transient (it changes), contextual (it is based on the situation), and 100% given by the receiving party – essentially they decide to trust you or not. In the real world we use driver’s licenses, passports, or referrals from friends to validate users and establish trust. This is no difference in the social web except for the fact that we are not seeing each other face to face and do not have the ability to provide a driver’s license as proof of identity. Hence the need for another method.
If the ingredients in the identity cake are aggregation, management and sharing, then validation is the icing on the cake; not the cake itself. While each of these ingredients are key in making the perfect cake, leaving trust out of the mix is kind of like leaving salt out of the recipe. Trust simply brings out the flavor and without it, the cake is way too bland!