Ram Rajaraman

24 June 2021

Addressing the concerns surrounding the aggregation and sharing of NHS data

Plans for NHS Digital to collect data held on 55 million patients from GP surgeries on 1st July have been delayed, following concerns about whether sufficient time had been given to inform patients of the move. 

The GP Data for Planning and Research (GPDPR) service will now launch in September, aggregating patient data from UK GP records to support planning and research and potentially provide life-saving data driven insights

The planned ‘data grab’ hit the headlines in May, when valid concerns around data privacy, a lack of clarity around governance of access to highly sensitive patient information, and the timing of the move surfaced in the UK media. 

The government also faced criticism for the timing of the data grab: with the responsibility of informing the public falling largely to overworked GPs, who are trying their best to recover from the worst of the COVID-19 pandemic. 

NHS Digital has confirmed that it plans to pool data from 55 million UK NHS Patients in a single database, which “will be available to academic and commercial third parties for research and planning purposes”. Although data will be fully encrypted and anonymised to protect patients’ confidentiality, the anonymisation process will be reversible – allowing for encrypted data to be decoded for “valid legal reasons”, although there is a lack of clarity about what these might be.

GP groups have also voiced concerns that the data grab will lead to an erosion of trust between the NHS and patients, which has led to many GPs refusing to hand over patient records. Dr Rosie Shire, a GP at Doctors’ Association UK said in an interview with the Financial Times

GPs were barely informed of this major change — how are patients expected to know about it? [We] support safe, consensual uses of patient data, including for health research. But we want to see it done in a way that . . . won’t erode the relationship between clinician and doctor.”

Originally, UK NHS patients were given the opportunity to ‘opt out’, by completing a form and handing it into their GP surgery before the 23rd June deadline. However, following calls from consumer and GP groups, this deadline has been extended to 1st September, and NHS digital has promised to spend more time speaking to patients, consumer groups, charities and doctors about the plan. 

Despite widespread concerns about GPDPR, there are many supporters of the plan. 

NHS Digital has said that sharing of health records: “will provide benefits to patients across England… Understanding patient data saves lives. Sharing GP data has been integral in identifying medical evidence and treatment, including . . . confirming the safety of vaccines, and investigating links between medications and cancer risk.”

The plan sits alongside the UK Gov’s recent draft policy paper, ‘Data saves lives: reshaping health and social care with data’, which sets out ambitious targets to push forward the transformative potential of data, capitalising on digital gains made during the COVID-19 pandemic to “unleash the unlimited potential of data in health and care”. In order to achieve this, the draft policy document proposes expanding the potential of data-driven innovation by “mak(ing) appropriate data the sharing the norm”, whilst acknowledging the need to build appropriate “technical, legal and regulatory” frameworks to protect public data, as part of the process.

Whilst NHS Digital’s plan to pool medical records may be sound in principle, it is essential that the proper safeguards are in place to ensure that patients’ right to confidentiality is respected. In order to maintain confidence in the NHS, there is also a need for greater transparency about how the data will be used. There is currently a lack of clarity around these central issues, and specifically the questions of exactly which organisations public health data will be shared with, and for what purpose.

Furthermore, there are valid concerns about potential data breaches, which we’ve seen across numerous industries before now. Attempts to harvest health data in 2016 were abandoned owing to data protection concerns. 

By joining up health data and capitalising on the capabilities of advanced analytics, such as AI and machine learning, we have the potential to make great strides in the fields of medical research and healthcare provision. However, the public also has the right to first know what their information will be used for, whether they will be able to access the innovations which benefit from the sharing of their data, and to demand assurances that privacy and confidentiality will be respected.

Synthetic data can play an important role in alleviating some – if not all – of these concerns, particularly attempts to strike a balance between privacy and the pressing need for accurate, reliable and large-scale analytics.

Synthesising at source is a good way of eliminating identifiable markers, and there is substantial work underway to ensure that systems for doing so are robust and reliable. When using synthetic data, it is of course essential to ensure that the output data is fit for purpose and of high quality and increasingly, this has been shown to be the case.

In order for meaningful, longitudinal analysis to take place, it’s necessary to enable longitudinal linking post-synthesis. With the right software and machine learning models, this can be achieved whilst simultaneously minimising the transmission of identifiable markers.

Simon Bolton, interim CEO at NHS Digital has said that it is “right that we have the debate” about concerns surrounding GPDPR, given the “highly sensitive” and “highly personal” nature of the data in question. 

Although there is scope for important, ground-breaking analysis from the aggregation of NHS GP records, there is also a need for NHS Digital to improve communication and promote greater transparency. Extending the opt-out deadline to 1st September and demonstrating a commitment to improving communication channels may go some way to helping NHS Digital re-establish public trust and avoid a large-scale opt-out on the part of GPs and patients. 

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