I just used Fax Your GP to Opt out of sharing my medical records

I just used the really simple tool FaxYour GP to opt out of sharing my medical records held by the NHS. Took only two minutes to do versus the cumbersome diversionary and hard to use process the NHS created to make it as hard as possible for you to opt-out. Thanks med confidential for point me to the service

Happy to have donated to your voluntary teams resources with a small donation. Keep up the good work, lets hope you get more supporters and grants to help you fight to keep our health records safe

Fantastic achievement as announced this week but clear it is not over a 6 month stay of execution on wholesale sharing of our medical records, which must not happen without informed and active consent and only when we are in control over the process, not being brushed under the carpet.

Why not simply make the individual the point of integration and sharing and stop the build up of giant data warehouses of medical records, simples

Amazon again and the tip of a very very big iceberg of hidden personal data usage

Interesting article from Rory CJ on BBC news about the Amazon move around Amazon Prime.  Today Amazon prime offers free delivery and getting things faster for a fixed fee per year.  Its not perfect, many of the things on prime cost more and many things are not available on prime.  They also slid under the wire at not extra charge the inclusion of Kindle lending library if you were a Kindle user, its a pretty poor service, previous comments on Kindle interface previously posted.

So Amazon have now said that you get unlimited streaming of films etc for the all new price of £79 a 60% hike in the annual fee.  Well no thanks Amazon!!!!!

Given they should know quite  lot about me, where I live, what I buy and how many times I am able to invoke Prime, they should be able to work out, coupled with their endless propensity models and external insight resources the following

• I won’t be able to use streaming due to digital exclusion derived from totally crap broadband speeds in my area, which are unlikely to fixed anytime soon either via fixed line or 4G
• I am not lazy consumer who just renews so I am likely to simply cancel prime
• I do not use the lending library service because it is rubbish

So why does an organisation one of the current group of digital data barons want to make this move.  Well lets think about it

• They want more data about me, my viewing habits, what I watch, what I search for, how long I watch things for
• They want to combine this data with the other data they have to monetise it in one or more ways
  • By improving offers and targetting my search and pricing to nudge me to buy more
  • By offering the insights for  a fee to those merchants who use their platform to sell to me
  • To sell insight about me to non competiting organisations to generate increased revenue for them
  • To demonstrate insight depth to those seeking distribution channels and showing why they are the best channel because they know so much about me as a real person unlike lets say the other data barons who make money out of my personal data Google, Facebook and Apple to name just three.

The reality is making money out of selling things to me conveniently and easily is just the top of an iceberg of monetisation of me as an individual. The injustice is I am the mechanical turk feeding their machine in return for nothing of value from the monetisation of my life and my personal data.  They have not explained the commercial model.  Unless you really think about you are blind to what is going on.

I am not empowered or informed, I do not even have equal access to the data I provide, Amazon do not offer the ability for me to download or collect my profile, transaction, preference and search data and store it myself in what are being called personal data stores.  Amazon like the rest of them see the data as theirs an asset class which makes them money and they see me as a free worker who feeds their machine.  See how much is being invested by the World Economic Forum in this subject a group with strong corporate backers, who are shaping the world, its a central subject the legendary Davos inner circle this year.

Worse still they make the data available to people who write apps or provide services, they make money out of me whilst keeping me in digital servitude

Amazon are not alone, this is what organisations have been doing for years its just gone globale, Personal Data is being described as the new asset class the new oil and unlike oil is limitless.

The old guard, the mobile network operators the banks, the utilities and the traditional B2C retailers and service providers are now being faced with an onslaught and attack in their own sectors by what Aral Balkan calls Digital Data Barons who are prepetrating digital feudalism on society as a whole and each individual.  Personal data itself, in all its forms the analysis of it, the use of it, the sharing of it.

These organisations provide largely free services or well designed services (not all of them) or low cost services to individual human beings in return for their data, behaviours searches, preferences, intentions, transactions and profiles.  The new world order where the individual is being enslaved to feed their machines blindly participating in data capture is happening everywhere, you only have to see how Open Data initiatives wants to consume personal data to deliver actionable insight, that the NHS in England want to give away our medical records to the all manner of organisations for “research” to cure cancer and solve countless worthy purposes but they are hiding the monestisation and there is not offer or engagement with the population scale personal data harvesting.  You can opt our but they make it hard, if it was not for organisations like Medconfidential working hard to keep our personal health information private without our formal consent it would simply be happening to us blindly.

Privacy, control, consent and engagement in use of personal data is a fundamental human right, it needs to be enshrined in laws that work and we all need tools to help us have that control.  Verified personal data about it is very very valuable it allows you to get things done on line that you cannot do easily today with forms and paperwork going by post or in person

Having the ability to collect it, manage it, analyse it and share it with who you want and to keep track of it is a core requirement for managing ones own life on and off line, the tools on offer from the usual old guard and the data barons make some things convenient but they never solve your longer term challenges they are simple data collection tools and harvesting models, they never really empower you.

So you need tools of your own, where the people who provide them do so to help you and only you and that poses a set of challenges commercial and government organisations and most third sector organisations do not want to take on as it is hard to see how empowering you helps them and at best they only want a thin deep slice or a broad shallow slice of your life so there you are stuck in the middle blindly participating surrounded by your data but with no real use or utility derived from it.

Data Data everywhere but not a drop of information or empowerment

 

Amazon Kindle Administration – Design Fail

I am obviously on a theme or maybe it is simply I have a little bit of time to reflect this week but have you noticed how appalling the Amazon UX is for managing the content in your library or your kindle itself.  What is surprising about it  is simply managing files has been around for a very long time and there are a wide range of open source tools and libraries for software developers wanting something off the shelf to help manage high volumes of files.

So lets look at what is wrong and then lets ask ourselves why its wrong, the answer may be a mixture of things

Whats wrong?

• No layout view options only a filter by type – simply bonkers, there are solutions out there for panel, list and preview scroll of files, they could show the cover or provide a preview easily.
• No sort options –  you know basic stuff by date, by A to Z, by size
• You simply cannot select multiple files and mass delete them or move them to a folder, it takes about five actions to select one and move it.  There is no checkbox next to each item, no select all, no deselect all
• The control buttons are far on the right a long way from the title and the listing is so narrow its hard to see if you are on the right item
• If you do want to delete a file you need to make multiple clicks to expose the feature and when you do you are made to wait for an inordinate amount of time before you see a change in your screen, it says successfully deleted but it is still there and then suddenly a clunky screen refresh and its gone, but there is about 8 seconds where you think you may have deleted the wrong thing. Come on Amazon.  It is also a whole screen refresh and then you are back at the top of the page so you need scroll back down to check it is gone!!
• No easy way of creating organisation in your vast collection of books and files, the organisation you create on your kind is not reflected in the web front end because I guess they did not think of having multiple views based on the devices organisation not just the library

Why is it so wrong?

I can only speculate as the problems seem easy to fix so it probably comes down to one of the following.  Rather surprising given the total control over the environment have, the significant profit that operating Kindle ecosystem provides to them, you would have thought a small amount of reinvestment would pay off through improved user experience and positive feedback.

• Developer Incompetence – The people running the platform development team for the web management interface within the amazon account and in the kindle itself simply do not get UX or have little or no understanding of what good design is or what is freely available out there as open source libraries to ease development of such features
• Product Management failure – Assuming the developers do know what they are doing but are being stopped by the product management team then it may be simply that they are being driven by the wrong set of motives or incentives that do not include customer experience. Perhaps they feel they are in control of a near monoply and being tasked with driving every ounce of profit.  It may be they are not encouraged to seek feedback, it certainly is hard to explain your concerns or provide feedback and they certainly do not seem to care or welcome feedback
• Roadmap plans – Perhaps they don’t plan to offer document storage for non Kindle format documents is on the wane and they want to discourage people from using this feature – one of its best features to be frank, sending documents to your Kindle to have them converted on the fly to Kindle format to be read is a joy.  Perhaps the current crop of Kindles are being end of lifed so we have to buy a new one with a a better user interface but that does not change the back end.

Whatever it is the underlying message  I am getting is Amazon may not care about their customers or their concerns, they are in fact not customers but simply numbers average revenue per month type measures and all they want is for us to spend more, not be happier and more loyal, they make it easy for us to find, order and pay for things but they do nothing to help us understand our lives or make use of the vast history of purchase and behaviour data ourselves.  They are part of the Data Feudalism brigade bent on knowing as much as they can whilst doing the least they can to help us understand or organise our lives beyond turning up at their shop counter and buying things we ease but after sales forget it!!!

I presume Amazon have an acquisition team, a revenue growth team, but I suspect the retention team is small because when people become addicted you do not have to care about how they feel they just keep spending and you can degrade them in the process as much as you like.  So lets think  about Amazon getting a little bit of real corporate social responsibility going, not just donating money to some worthy cause but actually ploughing some back into how they treat their customers post purchase across their life stages and events and help them become a little bit more empowered through better tools to manage and understand their life and behaviours and administer their information more easily.  This means Convenient tools that deliver simple to use administration and analysis functionality and control over how their information is used.

To do both you need to care and you need good design, Amazon please wake up and start delivering the whole service.

The hidden battle line exposed that we all face

I think most people carry on happily with their lives but only when something goes wrong do we sit up and take notices about the issues that surround our lives.  This is never more true than when we see convenience ease of use and free services online and via our smart phone devices.  The underlying truth of the situation is very concerning for anyone who cares about their privacy, liberty, independence and digital human rights.  I personally do not mind sharing information about myself but I expect to do it with my full consent and transparently be able to review who has what and why.   Two films shown below will explain exactly why that is not the case today and that if we do not address these issues we may lose something more valuable than our personal data.

Aral Balkan gave a powerful presentation (Digital Feudalism and how to avoid it –  a tale of indie data) at a recent conference covering not only this danger we all face but also why open source software design needs to step up to the plate if it is to contribute to the prevention of the take over of our lives by the small number of large corporates who are capturing our lives and mining by the sleight of hand of free services.  The first presentation is an hour long, start at about 5minutes 40 seconds to avoid the preamble

There was a film recently called terms and conditions may apply which frankly exposes the great deception that is underway that most of us are blindly falling into, in short the misuse and mining of our lives and personal data in what is being termed by Aral Balkan as digital feudalism.   The trailer for the film terms and conditions may apply is below, the movie can be rented on itunes or purchased which is ironic for reasons that will become obvious

If you care about your liberty, right to choose and privacy i urge you to care about these issues before you

Are we in an economic slavery of global proportions

I started watching this wondering who made it and why, is it propaganda, is it an attempt to reveal one of the great illusions of our society, I am as yet not sure, which ever it is, it makes you think and reflect about the role we each play and who and what is driving the way in which society operates, are we in the middle of an economic slavery which the majority of us simply do not understand or see.