Privacy advocates and patient groups have reacted to the government’s recently released data strategy, which it calls “fast work” and calls for protection for “NHS patients from the demands of those who want to benefit”. .
The draft strategy “Data that saves lives: reforming health and social care with data”, published today, aims to capitalize on the work done during the pandemic to improve health and care services.
According to the government, the strategy will allow patients to have more control over their health data with easier access to test results; drug lists; procedures; and care plans for all parts of the healthcare system through patient applications, such as the NHS application.
It is based on work that uses data from the pandemic, such as the NHS Covid-19 data warehouse, which was created to be a gateway to data during the health crisis.
But patient groups and privacy advocates have expressed concerns about who will have access to the data. In particular, the relationship of governments with the American technology company Palantir during the pandemic has raised eyebrows about the company’s access to patient data.
Phil Booth, coordinator of the medConfidential privacy group, called the strategy “dubious.”
The Boris Johnson government says ‘Data saves lives’, but buried in small print is a rather more dubious deal: ‘If you want to take better care of your data, you have to let us sell. “
“Once, the Prime Minister recalled that it was the nurses and doctors who saved his life, and the next time Matt Hancock declared that patients“ own their own data, ”he should remember that taking something that someone “owns” without their permission is not “sharing.” or “innovation,” it’s just a simple theft.
Diarmaid McDonald, lead organizer of the Just Treatment patient group, added: “Data can save lives, but it can also make many companies very rich. Therefore, we need to make sure that these plans place the needs of NHS patients ahead of the demands of those who wish to benefit.
“There are a lot of nice words in this plan about patient control and trust, but they propose to do everything after you’ve taken everyone’s data, not before. That’s backwards.
“Our questions are the same: how will the trusted search environment work and who gets the keys?
“And under what conditions does this government plan to allow companies access to this valuable new dataset, and how do you make sure the NHS doesn’t get carried away?”
The draft data strategy includes a case study on NHS Data Store Covid-19, created to manage multiple data sources to help the government respond to the pandemic, as a success story in the use of health data.
The data warehouse is said to have helped decision makers understand how the virus spread; ensure that critical equipment is supplied to the most needy facilities; and to support clinical research. But the government has been under fire for its relationship with Palantir and other large technology companies involved in the data store, specifically over the lack of transparency about contracts and access to data.
The government has recently pledged not to extend the £ 23 million Palantir contract beyond the uses of Covid-19 without consulting the public following a threatened judicial review by technical justice firm Foxglove Legal.
Dr Rosie Shire, a family doctor at the UK Medical Association, said the strategy “is not worth undermining the relationship of trust”.
Posting the strategy, Health Secretary Matt Hancock said: “This strategy is about controlling people’s own data, while supporting the NHS in creating a modernized system suitable for the 21st century. which puts patients and staff in pole position “.
“Capturing GP data”
Others related the data strategy to recently deferred general planning data for planning and research (GPDPR). was criticized for lack of time, GPs had to inform patients about the program.
Cori Crider, director of Foxglove, criticized the strategy of “90 pages in applications and only one in GP data” at a time when NHS Digital, which was working under government instructions, has faced allegations of capturing data.
He added that the government had admitted that it needed to “develop a strategy to get value for money from the country’s health data. This work in a hurry certainly does not.”
GPDPR aims to provide planners and researchers with faster access to pseudonymized patient information. It was a separate program from the draft data strategy, but it relates to how the government plans to use the data in general.
NHS Digital announced in May 2021 that the new service would take effect on July 1, 2021, with the scheduled date until June 23 to choose not to participate. After dealing with the reaction of patients, doctors and health charities the deadline was moved to September 1, 2021.
The draft strategy was published before a consultation with the public and stakeholders during the summer.