I was not sure whether to add the document linked below. However having access to our data and making sure it is correct underpins our health and well being. It was published yesterday 1 July 2020.
There are great changes coming with Local Health and Care Records which will combine all our medical records from various sources with any social care records.
This document reports on a huge project undertaken in London over several weekends. The aim was to understand what citizens wanted to see happen with their information. What rights would citizens have over their data, personal access, sharing, appropriate professional access, research use and so on.
The results were very clear on many topics. It’s an interesting read. I was fortunate to be an observer in this process and the citizen voice was strong, informed and powerful. I think this work will shape what happens to our information. Worth a browse if the topic interests you.
The information is to be used for the new Local Health and Care Records being set up across regions. The programme started off with 5 Exemplars. Some areas are up and running with some linked services but most are in development. The Great North Care Record in the North East, One London, The Leeds Care Record etc etc Primary Care records are being joined slowly and indeed in London all GP are linked into the One London Record. Patient access is limited currently and is developing slowly hence the work on what citizens want and expect.
Serco as far as I am aware have a contract for storage of paper records for primary care but not access and use. Virgin care run primary care services so they will be in the mix in planning.
The picture is muddled throughout the country and it is probably best to investigate what is happening in your area. Patient access is slow and some areas have developed patient portals. However no Local Health and Care Record is at the same stage and development is continuing.
The work done on Citizen engagement by One London was very thorough, it had the backing of government and policy writers. The Citizen views will underpin the development of the London Care Record and there is an expectation this will set the standard and NHS England will adopt this.
I think many people are concerned that our Confidential records were given to Serco without prior consultation. Their background is not exactly one that screams confidentiality successes. Then there's Planatir ( excuse spelling ) and Apps that are first linked to J-Hub - a surveilliance company close to Central government. As a grumpy grandma I find all this interconnecting technology very scary. Maybe I have been reading too much during lockdown !!
If this OneLondon and associated set-ups have nothing to hide - why isn't the government shouting about it from the rooftops ?
I mentioned in a recent post about ensuring our records were correct in case the wrong info was used against us in the event of Medical Insurance coming to a street near you. I believe that chlorinated chickens is not the only thing from the US knocking on our door and is already in motion.
The head of NHS England worked for one of the biggest Private Medical Insurance companies in the US for many years.
I share your views, my medical information, lifestyle info in fact all records are personal and confidential. I want control over it not just for directing care but to avoid all the other pitfalls if information is incorrect.
The irony of the last 4 years fighting the GP tooth and nail for access to MY OWN information became clear recently when the Practice copied and pasted my complete historical medication list and diagnosis summary from birth for a life insurance application. The insurance form warned about relevancy and asked directed questions eg medication in last 3 months.
The headings were ignored and even hx pregnancy losses from 35 years ago were listed with Carer information.
I have not used primary care services for two years and have not raised prescriptions in that time. The information given away was personal and totally irrelevant to the application. The attitude to patients information is a disgrace. I raised a complaint and they removed some information. Ironically this was a repeat application as my husbands GP declared he had a genetic condition in error which resulted in a £49 per month EXTRA premium! The importance of checking all our information cannot be overstated.
One London and all the other regional Local Health and Care Records are NHS not commercial companies. It is a reorganisation of NHS information services which has been organised into regions which interconnect and can share information on request. The idea of a national record was open to too much risk if hacked etc
The report is good from a citizens point of view. We need to make sure it is acted upon. The first step is getting the information out there.
By the time anything comes in the news, the deals are done and dusted.
I believe, our information has already been given, free, to the Big A or someone years ago. NHS data of 60 million people, to be mined for profit in a myriad ways. AI will know more about us and predict our health and choices better than we do. All this so that we get individualised advertising. How generous of the government with our data.
You raise an important point- the subject of opt outs. Very few of the public are aware of opt outs that are available to them. I have Type 1 and Type 2 opt outs in place. Type 2 has been converted to the National Data Opt out which you can set on the NHS App. Type1 has to be issued directly to the GP and prevents your information being used for anything but your care.
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health records and what you may find in them.
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