Out-Law News 1 min. read

Opt out statistics highlight need for better engagement with the public on the benefits of sharing health data, says expert


Figures revealing the number of times patients in England have stopped their doctors sharing their medical data for purposes beyond direct care highlight the need to better engage with the public on the benefits of health research, an expert has said.

The Health and Social Care Information Centre (HSCIC) said 2.2% of GP patients in England have "opted out of information that identifies them being shared outside of the HSCIC for purposes beyond direct care". This means that approximately 1.23 million GP patients in England have exercised their 'type 2 opt out' right, according to HSCIC figures.

The information centre said that an unknown number of patients had also exercised their 'type 1 opt out' more than 1.4 million times in total to prevent their GP records from being "shared outside the practice for purposes other than direct care".

Direct care is defined as "a clinical, social or public health activity concerned with the prevention, investigation and treatment of illness and the alleviation of suffering of individuals", according to the HSCIC.

"The public generally acknowledges the need for health bodies to share medical data so that they can be properly treated, but there is a lack of trust among patients about their health data being used beyond that purpose. Some of that lack of trust derives from media reports about failings in data security, the illegal trade of data or the mishandling of information across different sectors," expert in life sciences Helen Cline of Pinsent Masons, the law firm behind Out-Law.com, said.

"Patients need to be confident that their data, if it is to be shared, will be both secure and not used in a way that would be detrimental to them, or further shared with other third parties they would not expect the information to be disclosed to. In addition, patients are likely to be more open to sharing their data if any commercial benefits that arise from those arrangements are fed back down to the NHS, and possibly used to fund patient access to new innovative and often expensive medical treatments," Cline said.

"These statistics from the HSCIC therefore demonstrate the need to better engage patients on the value to them, their loved ones and society of sharing their data," she said.

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