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!”
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.
Having my identity located in so many different databases is like wearing multiple watches
You never really know what time it is!
Methinks that Ziggy secretly works for Facebook.
He is incorrect, however, everyone needs secret identities.
I posted a status to Facebook that included the words “Sea World” and all of a sudden I received a recommended page for Sea World and other Orlando theme parks in their advertisement section. Does anyone really think that Facebook isn’t parsing every post for nuggets they can glean and use for advertising purposes?
From a technical perspective, it is pretty impressive. From a privacy perspective, it is very very scary.
|Brave New World
by Aldous Huxley
See this book on Amazon »
Bill has read this book
|Comment: ”Wow, what a read. When I first started reading this, I thought that it must have been updated for today’s language. Imagine my surprise when I found that this book was written in the 1930s and other than it being translated from French to English, the content was the same (even the discussion about helicopters). I was amazed that the style was very similar to today’s writing.
This is a glimpse into the future were mankind is subservient to the government – not because of oppression, but because we want to be. The government provides all of our needs and desires (including sex, drugs, and entertainment) and we are more than happy to be cogs in the machine.
One man begins to question the establishment when he meets a “savage” that has never lived under the government’s control or conditioning. Imagine everyone’s surprise when the savage does not bow down and he is unequivocally kicked out of the “civilized world”.
Huxley’s novel includes controversial topics such as free sex, government conditioning, drugs, and even population control through a type of cloning. Many of these topics were unheard of in the 1930s and as such, has placed Huxley as a man before his time.
I HIGHLY recommend this book for the thought provoking images it that it brings to light.”
by Phillip J. Windley
See this book on Amazon »
Bill has read this book
|Comment: “This is a clear, consise, and easy to read book on IDM and DRM. I recommend it HIGHLY to anyone who wants an overview of IDM and its roots in the X.500 space. While Digital Identity does not specifically address certain concepts such as roles management, it is an essential resource for anyone’s library of identity management books. I understand that this book is now out of print; this is unfortunate as I was looking forward to a 2nd edition.”|