Tens of thousands of people in Wirral have chosen not to share their medical records for research and health care planning, figures show.
Sharing patient data is ‘vital’ for research into life-changing diseases, including cancer, diabetes and long Covid, and has been essential in developing responses to the coronavirus pandemic, according to NHS Digital .
But its figures show that 30,367 people in Wirral had signed up for the national data opt-out program as of September 1.
The program enables patients to prevent confidential information held by NHS Digital from being used for purposes other than their care and treatment.
It is different from another ‘type 1’ withdrawal system, which prevents NHS Digital from collecting information from GP records.
Figures on Type 1 opt-out options are not available, which means the number of patients who have chosen not to share their medical records may be higher.
Patient data can be used for vital research and, throughout the pandemic, has been used to expand the list of protected patients, to identify the most effective treatments for Covid-19 patients, and to support implementation. urgent service of services to help people with “long Covid,” the NHS said.
However, there has been a sharp increase in the number of Wirral patients choosing not to share their data through the National Opt-Out Program in recent months.
NHS Digital figures show that 9,980 patients in the region signed up for the program, which was first launched in 2018, between May and September of this year alone, or 33% of the total.
They were among more than a million people to do so across England in the same period, meaning more than 3 million patients have now set a data opt-out option.
A surge in enrollments in the existing NHS data opt-out program came after activists and groups, including the Royal College of General Practitioners, expressed concern over proposals to introduce a new data collection process in England.
The GP Data for Planning and Research program was announced in May as a more effective and efficient way for NHS Digital to collect GP data.
It was due to start in July, but was suspended following widespread criticism.
Professor Martin Marshall, president of the Royal College of GPs, said the figures showing an increasing number of patients enrolling in the national data opt-out program were not surprising given the confusion surrounding the GDPR program.
He said sharing data for healthcare planning and research has been “vital” during the Covid-19 pandemic, but patients need to be sure they understand how their data will be used.
A spokeswoman for NHS Digital said medical research and planning benefits everyone, but is “only as good as the data it is based on” as she urged patients to ensure they make an informed decision about sharing medical records.
She said the NHS takes its data protection responsibilities seriously and that the data collected would only ever be used by organizations with a legitimate need to access it.
However, Cori Crider, director of digital rights organization Foxglove, said the latest numbers from the opt-out program showed patients were not reassured about what was to come to their medical data.
She said: “Only a fair, safe and trustworthy system that does not allow companies to exploit the NHS for private gain will make the three million people who have chosen not to consider thinking again.”