You have until June 23, 2021 to opt out of sharing your NHS data with researchers and companies outside the National Health Service. Privacy activists have raised serious concerns about NHS Digital’s plans to import the medical histories of more than 55 million patients in England into a new database, including mental and sexual health records, criminal records and more sensitive information. The database does not contain the complete addresses of the patients, pictures or videos of consultations or legally restricted data such as IVF treatments or sex reassignments.
The deadline applies to individuals who live in England and who are registered with a general practitioner clinic. NHS Digital, which operates the country’s healthcare IT systems, says a new centralized database is needed as the current system is used by general practitioners. known as General Practice Extraction, is over a decade old.
So what happens to all of this patient data that is collected and shared?
The information will be made available to scientists and commercial third parties, data protection officers have claimed. The records are supposedly used for research and planning, with NHS Digital claiming that records “decide what new health and care services are needed in a local area, inform clinical guidance and policy, and aid research and development of cures for serious diseases such as heart disease, diabetes, and cancer. “
NHS Digital shares a list of people it shares its data with, which is updated every month, although activists say that because of the NHS ‘”opaque” business relationships, it can be extremely difficult to find out who is seeing the data. For its part, the NHS says that patient data will never be used for insurance or marketing purposes, the promotion or sale of products or services, market research or advertising.
According to the NHS, personal medical records are anonymized to keep your identity private. However, the code to decrypt the anonymized data is stored by the NHS and used to reveal identity when there is “a valid legal reason”.
Privacy campaigners claim that overall plans are “legally problematic” and that patients have not been given enough time to opt out of the new policy.
Digital rights activist Foxglove questioned the legality of the move in a letter to the Department of Health and Welfare. Attorney Rosa Curling wrote in the letter: “Few citizens will know that the new processing is imminent and that it will directly affect their personal medical data.”
To remove yourself from the database, you need to fill out a form and send it to your GP. If you don’t do so before the deadline, your medical records will become a permanent part of the NHS Digital database. The opt-out after June 23 will continue to work, but will only apply to future dates. All historical data will continue to be available to researchers, academic and commercial partners of the NHS. You will find the form required to unsubscribe Here.
Advocacy advocacy MedConfidential, a privacy-focused group that was instrumental in raising the alarm about the upcoming deadline, told the Financial Times, “They’re trying to smuggle it out, they’re giving you a nominal six weeks and if you don’t act based on websites on the NHS digital site and some YouTube videos and some tweets your entire GP history could have been scraped out and never deleted. “
This is not the first time the NHS has attempted to consolidate primary care records from patients across the country into one central database. The Care.data program was sold back in 2013 in order to centralize digital health records. However, the project was suspended three years later due to data protection complaints.
The UK Data Inspectorate is believed to be preparing an impact assessment focused on data protection around the current plans of the NHS.
Speaking to Express.co.uk, a spokesman for the NHS Digital spokesperson said, “Patient data is already being used on a daily basis to plan and improve health services, to conduct research that leads to better treatments and to save lives. During the Pandemic data from GPs has helped millions of us: It helps identify and protect the most vulnerable, launch our world’s leading vaccine program, and identify hospital treatments that have prevented people from dying from Covid.
“We have worked with physicians, patients, data, privacy and ethics professionals to design and build a better system for collecting this data. The data will only be used for health and care planning and research purposes by organizations that have evidence.” that they have an appropriate legal basis and legitimate need to use it.
“We take our responsibility for protecting patient data very seriously.
“Researchers wishing to access this data must approve any request from the Independent Advising Group on the Release of Data (IGARD) and a GP Professional Advisory Group (PAG) made up of representatives from the British Medical Association and the Royal College of General Practitioners. “