Delays to NHS project ‘golden opportunity’

Work on the central database, which links records from GP practices with hospital records, was due to start in April but last week NHS England decided to delay the project by six months.

Doctors and patients’ groups have voiced concerns about privacy problems, data breaches and flaws in the communications campaign which gives people the chance to opt out.

Information such as a patient’s gender, date of birth, NHS number and postcode will be used to link their GP and hospital records. But after that process has been completed, a new record will be created for the database that does not identify the patient.

Two major GP system suppliers based in Leeds – Emis and TPP – believe the NHS should adopt a tool known as pseudonymisation-at-source, which removes information that identifies the patient, such as date of birth and NHS number, before it leaves the GP surgery to increase patient privacy.

The tool, which is used by Emis and TPP, was developed by researchers at Nottingham University and has enabled data from GP practices to be linked to other information – including hospital data, cancer data and mortality statistics – to provide important clinical insight for researchers without identifying individual patients.

Tim Kelsey, NHS England’s director of patients and information, has said pseudonymisation at source technology is not ready for use on the Care.data programme.

However, experts believe it could be used on a national scale.

Shaun O’Hanlon, chief medical officer at EMIS Group, said: “The decision by NHS England to pause the programme in order to address concerns – and to better inform the public and healthcare professionals about the programme – is a pragmatic one.

“Our own experience of supporting a not-for-profit clinical research programme, QResearch, has shown us that it is possible to use patient data for research purposes while protecting its confidentiality.”

He added: “We believe this approach could potentially be used by NHS England for the Care.data programme, subject to large-scale testing.”

TPP said the tool has helped the company to ensure that any large-scale data linkage projects meet all national ethical and governance requirements. It added: “There is no reason why this methodology could not (or should not) be delivered for national data extracts from clinical and administrative systems across the NHS.”

Dr John Parry, clinical director at TPP, said “The pause in the care.data project is a golden opportunity for the NHS to set data export standards, facilitating important information flows whilst protecting patient confidentiality.”

Researchers believe the information collected by Care.data will be vital in helping them develop new treatments as well as assessing the performance of NHS services.

Experts say it will enable them to assess diseases, examine new drugs on the market and identify infection outbreaks as well as monitor the performance of the NHS.

However, many patients believe they are being kept in the dark about the database despite a national communications campaign, which included a mass mail-out to every household in England since the start of the new year.

There have been reports not everyone has received them.

Graham Poulter, founder of the former Leeds-based ad agency Poulters who now develops management software tools for the NHS, supports the database but described the communications campaign as “ineffective” in conveying the benefits for patients.

“The single leaflet through the door, which looks and feels like all the other ‘junk’ mail, failed to convey the importance of the planned use of the patient data,” he said.

“It has also been mentioned in various channels that there is the possible use of the information by private companies. Only organisations qualified as medical related organisations, ie drug companies, will have access to completely anonymised data, and not insurance-type companies, which could exploit the data.”

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