'Do not opt out of Care.data' plead health charities

By Sooraj Shah
13 Jan 2014 View Comments

Leading health charities including Cancer Research UK are pleading for patients to not opt-out of the NHS's data sharing scheme, Care.data.

Charities such as the Wellcome Trust, The British Heart Foundation and Arthritis UK are backing a new campaign to emphasise how valuable the data held in medical records is to them.

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Under the programme, researchers will be able to access non-identifiable data collected from health records.

The charities say that it can help researchers to better understand diseases, improve patient care, and develop better treatments.

"Locked inside our medical records is a mine of vital information that can help medical scientists make discoveries that can improve patient care and save lives," The British Heart Foundation's medical director, Professor Peter Weissberg, explained.

"With the right safeguards in place to protect confidentiality, this new system will be of enormous benefit to patients and help reduce the burden of heart disease in the future," he added.

GPs were to have sole responsibility for raising awareness of the scheme under controversial plans made by NHS England. But after protests from GPs, the NHS  decided to spend £1m on sending out leaflets to householders to explain the Care.data scheme.

The charities are concerned that people may believe that the programme will infringe their privacy, and are launching adverts in national newspapers in a bid to encourage people not to opt-out.

"Patients can choose whether or not to share their information. That's why it's important to raise public awareness of the benefits that access to patient records can bring so that everyone can make the right choice," said Weissberg.

But the gathering of patient data for research purposes is not a new phenomenon, according to Gayna Hart, the managing director of IT healthcare systems supplier Quicksilva.

"The NHS already collects information from hospitals and this is simply an extension of that scheme; the next natural step towards developing an even richer set of data that is essential if healthcare professionals are to identify trends, spot the spread of disease and decipher how effective treatments are within timescales that really count," she told Computing.

Hart believes that Care.data is essential to help improve existing treatments.

She urged those who are thinking of opting out to "examine the overall benefits and consider the layers of security that are being put in place".

"No one wants a repeat of previous data breaches caused by out-dated security measures, and the NHS has started from scratch applying the latest secure processes. No one individual can be identified from the anonymous research data and samples of data cannot be linked to one another," she explained.

However, Hart said that the biggest challenge is to convince the public to trust the process.

"Unless this can be achieved quickly, a whole generation of data will be lost," she said.

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