NHS England has today (Friday, 25 May) launched a six week public campaign to raise awareness of new stronger protections for patient information.
The NHS and social care uses citizen’s information to improve individual care, reduce unnecessary tests, speed up diagnosis, plan local services and research new treatments.
Today, the General Data Protection Regulation (GDPR) comes into force in the UK, giving the public more control over how their personal information is used and the Government has also introduced a new national data opt-out, which offers people a choice on whether their confidential patient information is used for research and planning.
As the strict rules governing how data is used are strengthened, the NHS is joining the ICO’s (Information Commissioner’s Office) broader ‘Your data matters’ campaign to raise awareness of how personal information is used by organisations.
The NHS campaign will initially focus on General Data Protection Regulation and then from early June it will promote the choice the public have with the new national data opt-out. This staged approach is designed to support clinicians and ensure messages are reaching the public in a clear and accessible way.
As with every campaign, the impact will be monitored to ensure messages are reaching the public.
Dr Simon Eccles, chief clinical information officer for Health and Care, said: “Sharing information between health and care professionals can be lifesaving by quickly providing staff with the details they need, from patient histories to previous test results and care plans.
“The NHS has led the way in research and innovation from discovering DNA to pioneering IVF, looking into the future using data for research could result in even more breakthroughs.
“This campaign will highlight to the public how the health and care system uses their data, safely and securely, to improve the care they receive, plan services and research new treatments and to tell the public ‘their data matters to the NHS’.”
The campaign will include commercial radio, national and website advertising.
Health Minister Lord O’Shaughnessy said: “If you’re a patient, you want to know that – wherever you’re treated in the NHS – medical staff can access all the relevant health data about you. This is especially true for people with complex conditions.
“At the same time, patients want to know their data is stored safely and that they have choices about how it’s used for purposes beyond their direct care, like research. Together, the new GDPR rules and the national data opt-out will give patients that reassurance.”
Dame Fiona Caldicott, National Data Guardian, said: “I welcome the progress we are seeing to help people understand how health and care data may be used and what choices they have. These are important steps to build the vital foundation of public trust for the use of such data, which holds benefits for all of us – from researchers making breakthroughs in life-saving treatments, to better planning of services, to regulators seeing things going wrong promptly.
“When I carried out my review of Data Security, Consent and Opt-Out I listened carefully to the public. I heard clearly that most people want health and care data to be used both to improve their own care and also to benefit others. But they also want reassurance – to know that data will be kept safely, to be told how it is being used, and to know what choices they have.
“The creation of a national opt-out for those who did not want their data to be used for research and planning was one of the key recommendations I made in that review. Its launch is a step forward in ensuring that transparency and choice characterise an ongoing conversation with the public about how health and care data may be used.”
Professor Helen Stokes-Lampard, chair of the Royal College of GPs, said: “Patient data collected in general practice is an incredibly rich source of intelligence that can inform high-quality medical research, and help with planning NHS services, both of which can ultimately benefit patient care.
“But patients must be comfortable with their data being used in this way, and confident that it will be used appropriately. GPs and our teams take the use of patient data very seriously – we hope the National Data Opt-Out will reassure patients that their data is safe, and strengthen the unique GP-patient relationship.”
Janet Davies, chief executive and general secretary of the RCN, said: “Sharing data is vital so nurses and other healthcare professionals can develop efficient, targeted services, and provide patients with safe and effective care.
“But the public has a right to know their healthcare data is secure, and how it is being used. The RCN welcomes this campaign aimed at highlighting stronger public data protection, and giving people greater control and ownership of their personal information.”
Dr John Chisholm, BMA medical ethics committee chair, said: “While appropriate and effective data sharing is extremely important so that improvements can be made to healthcare services, it is important that patients are able to control what is done with their confidential information held by the NHS.
“The BMA supports the new opt-out model but is glad that patients will still be able to register the previous ‘type-1’ model, which stops identifiable data being shared outside their GP practice for purposes other than direct care, until 2020. We also welcome the government’s additional commitment to implement a system by which GP-held data is de-identified before leaving the practice by September 2019.”
Jacob Lant, head of policy at Healthwatch England, said: “Our conversations with people over the last three years have consistently shown that the public trust the NHS with their data. Indeed our latest survey shows they have more faith in health and care services to use data appropriately and keep it safe than any other sector including retail, banking and other public services.
“Most people also support their patient data being used to inform research and improve the delivery of care. Our latest poll suggests 3 in 4 back the idea.
“But whilst overall support remains strong, high profile scandals around the use of data run the risk of eroding public support.
“The opt-out coming in to force is not the end of the debate on how data is used. It must be seen as the start of a new phase for the health and care sector, one that will require the NHS to continually make the case and demonstrate why it is so important that we make our data available to them.”