You may be aware that the NHS have been undertaking a project to make confidential, private patient data available to third party organisations. The project is called The General Practice Data for Planning and Research Scheme. The organisers of this project assured patients that their data would be anonymised, but security researchers have determined that this anonymisation process can quite easily be reversed, by the application of a relatively simple piece of programming code. Whilst the operators of the scheme say that some personal data will be removed from the database, much will be included by default - information such as gender, sexual orientation and ethnicity will be made available to third parties, as will data about diagnoses, symptoms, observations, test results, medications, allergies, immunisations, referrals, recalls and appointments, including information about physical, mental and sexual health. Since this story broke in the popular press, many UK residents have been alarmed by the apparently cavalier way their personal data was to be sold to third party organisations for cash. In a recent interview, a representative of NHS Digital - the organisation behind the proposed data sale said:- "Patient data is vital to healthcare planning and research. It is being used to develop treatments for cancer, diabetes, long Covid and heart disease, and to plan how NHS services recover from Covid. Medical research and planning benefits all of us but is only as good as the data it is based on. The better the quantity and quality of data collected, the more useful it is for researching new treatments or for planning good, sustainable NHS services to meet patients’ needs, so it is vital people make an informed decision about sharing their data. We take our responsibility to safeguard data very seriously, and it will only ever be used by organisations that have a legal basis and legitimate need to use it for the benefit of health and care planning and research. We have listened to feedback on proposals and will continue working with patients, clinicians, researchers and charities to inform further safeguards, reduce the bureaucratic burden on GPs and step-up communications for GPs and the public ahead of implementing the programme". Privacy researchers are concerned that, whilst the reasons for the data share cited by NHS Digital are well meaning, it is likely that huge swathes of personal data will also be sold to less than ethical organisations, including giant American healthcare conglomerates and life insurance companies, and that the guarantees of individual anonymity are not worth the paper that they are written on. After the proposals were quietly announced in May, doctors’ leaders objected to the short six-week deadline for the public to opt out of the scheme, while privacy campaigners warned the process to remove identities could be reversed.The deadline was initially delayed to September, but an online campaign encouraging people to opt out grew over the summer. Government figures show that in May 107,429 people opted out. In June, a further 1,275,153 followed. NHS Digital had originally intended for the project to be complete by the end of September 2021, but that date has now been abandoned. Patients have been wary of the scheme, not trusting NHS Digital with information which they do not want made public. The competence of the NHS Digital project team in dealing with this technically complex and politically sensitive enterprise has also been called into question. The huge number of patients who have refused permission for their data to be used has meant that the entire project is now in jeopardy. The latest development is that NHS Digital have announced that, in a major concession to critics, patients will now be allowed to opt out at any stage, with their data deleted even if it has already been uploaded. NHS Digital is also pledging to increase the security and privacy of the data, even while researchers are working with it. What do you think? Email me at firstname.lastname@example.org.
The article about smart meters and local fly tipping in last weeks' Maggot Sandwich update has provoked further feedback from concerned readers. One particular local reader sent me the following piece for publication:- "Smart Meters. About 10 years ago we were fitted with smart gas and electricity meters, one of which was complicated by the age of the installation in our house, in a place formerly a cupboard under the stairs, but a previous owner turned the stairs around while also knocking a wall down. We hide the meter with a Large cupboard and dresser with a hole cut into the rear. As you can imagine, having to empty and move everything was a nightmare. And of course the first meter replacement didn't work, and he had to go back to base to fetch a replacement, leaving us without electricity for several hours, which meant no central heating for that time. It was mid-winter. The gas meter is in an external box, so was quickly changed with no problems, then they gave us this sort of hand held display unit wired into the mains (meaning we are charged for it working) which provides different displays for both meters, giving price in usage in £ and pence. The problem is that occasionally the display is too dark to read and to be frank, I just can't be bothered to use a wired in (not wireless unit) due to the pure hassle of getting to it. Our meter readings are sent by weekly text message from the meter to the supplier. Like your other correspondent I can go online to manage our energy accounts so we don't worry too much until we get the usual message that they need to amend the amount we pay monthly by direct debit. When I will raise a complaint with the supplier if I think they are being unreasonable. We are on yearly billing, with half - year updates, so we are not costing the energy supplier a large amount in administering the account, and their charges are reasonable with a fixed deal (which are apparently being withdrawn). And we always have a credit, sometimes substantial at the end of a billing year. Getting this credit returned is another issue, but I will leave it there. The thing is that we have a smart meter, and have been contacted at least five times in the past two years "Telling us" to make an appointment to have an upgraded version fitted? I refused point blank, and they then telephoned to try to persuade me that "I have to have it" leaving the consequences of "Not Having it" hanging in the air. At the moment it has all gone quiet, perhaps the pandemic and them all working from home has stopped the veiled threats, I do hope so. What worries me about all of this is that I am categorised by the supplier as vulnerable in terms of my spouse's ill health, so should receive some consideration and offers to assist with unaffordable heating costs, but I have not received any such treatment, just reminders about an unwanted 2nd generation smart meter". What do you think? Email me at email@example.com.