Tim Kelsey discovers care.data is in trouble…

Some times people get it just right don’t they. Today in parliament select committee one of the potentially biggest abuses of our personal rights and our personal data, some of the most sensitive information about ourselves was discussed fully and frankly and the NHS in England and the HSCIC were found wanting. I have never seen so many witnesses lined up with consistent real concerns so clearly presented to a committee, not a committee so engaged and insightful on a major issue only to find those whose job it is to protect, support and manage this asset of us as individuals to be found wanting

Let us hope that we will see a radical policy shift that places personal control over personal data in the hands of the individual regardless of the education programme needed to get people to participate. This will be better for individuals, better for the NHS and better for research and better for the economy. As Chris Graham the Information Commissioner says we have got to stop brushing the offer under the carpet and let people know what is going on and what there will be used for an let them decide in an informed consent model based on digital consent being granted and not keep us consigned to the paper world whilst the data is harvested at the speed of light from GP’s into the mother of all Big Data warehouses and made available to people unknown for unknown purposes.

By the way
I want to support research that will help the world
I want to be able to share my health records or bits of them that need them

I just do not want it done to me without my consent or active participation.
I want improved outcomes for the nations health and yes £93bn of public money funds the health services in the UK each year, if we can dramatically reduce the cost of delivery and improve the quality of diagnosis, prescribing, improve the quality of care and streamline processes I am up for it, but I want to be involved and I do not want it funded by some secret sponsorship deal or some cost offset deal created by the drug and life and pension and health insurance companies and the digital data barons at Google, Apple, Facebook etc in return for some claimed boost to UK plc coffers around inward investment.

We can do better surely

Paul Bernal's Blog

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Packaging is a nightmare and it is costing us all dearly

Have you noticed how terrible much of the packaging we get today is.

• Its nearly inaccessible – the use of plastic to wrap products is causing injury as people try to access the product they purchased and the type of plastic is sharp and hard to open, it is also in a lot of cases is not recycleable, so you cut your hands to shreds, you clutter up your waste bins with things that go to landfill
• The instructions and safety are wasteful of paper all in the name of globalisation and compliance – Have you ever bought a product where the regulatory notice and the instructions actually take up more space than the product itself, no one reads them and the actual information you want to have gone on a single plastic credit card sized piece of paper.  so who is it helping and how does it save the planet or deliver a good experience for the consumer, in short it does not it in some twisted way is the bean counters and manufacturing managers who think it is a good because they have a common product they send out across the world.
• Power supply cables – Because we cannot agree standards, we end up with nearly a meter of copper cable we through away everytime as we do not need it as it for a different country.  What does a copper three core wound cable cost and if you sell a million products its a million meters of cable that ends up in the bin or a cupboard for two years before it ends up in the bin
• Font size on the side of tins and packets – You now need an electron microscope or at least  a magnifying glass to read the information on the side of tins, packets and other products.  Why?, is it a desire to be regulatory compliant first and not consumer centric first.  People do want to know what to do but it is lost in all the other information that regulators now say need to be provided to be legally compliant.  but no one reads it do they.

So what are the common themes here

• Regulatory compliance trumps being customer centric
• Customer experience is considered secondary to convenience for retailers in terms of packaging
• Operational and manufacturing cost efficiency trumps protection of our natural resources and the environment

Now lets be clear some people do try to do better. Amazon use cardboard for their packaging, it is recycleable, it is cheap and it is based on recycle material. I know I give them a hard time for so many other failings but they get this largely correct even if the reason they do is it is cheapest option with a brand carry on environmentally responsible, corporate social responsibility as a spin off benefit

If you look at clothes retailers they use plastic which cannot be recycled but is waterproof.  Big retailers of electrical products are simply demanding packaging that goes on a display unit easily and no consideration is being made for the waste of natural resources.

Here is an example:  I got three memory sticks the size of a domino each from Amazon. They arrived in a cardboard box on a cardboard display pack with a plastic built in.  I saved petrol by having them posted, bought at  a cheaper price than in store by 30% and also got free delivery.

So is there someone out there doing the maths, how much natural resource are we wasting in terms of

• plastics of many types
• copper cable
• distribution costs due to space wasted
• medical supplies repairing the damage caused by packaging
• land fill for things that cannot be replaced

Should we be asking ourselves

• How many pence in every pound we spend
• How much time do we waste a year dealing with poor packaging
• How much stress does poor packaging cost
• How did the madness of bean counters and manufacturing managers become more important than the environment and the customer.

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