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A large number of people are uncomfortable that commercial bodies are able to access their anonymised healthcare records, surveys have found.
Health charity the Wellcome Trust surveyed 2,000 participants and found that the majority (53%) of people were happy to have their data used by commercial organisations, but only for research. 60% would rather commercial research organisations had access to their health data so that society do not miss out on the benefits the company could produce.
However, there was a minority of people (17%) that completely objected to private companies having any access to their health data, which raised the suggestion that an opt-out option should be available for anyone who does not want their health data shared.
Only a quarter supported sharing anonymised health data with insurance companies in order to get better insurance prices, and 37% supporting it being shared for marketing health products.
The report found that “public trust in organisational use and handling of data is at a very low ebb”. Data breaches happen all too often in the healthcare sector, with cases such as the 56 Dean Street Clinic reminding us just how serious a small error can be. Sharing personal data with different organisations arguably increases the risk of data breaches, and with the data being sensitive medical data, it’s a serious concern.
The government’s reported failure to properly consult the public over Care.data, where the NHS takes data from your GP records and gives them to the Health and Social Care Information Centre database, has damaged people’s trust in such schemes.
Director of privacy campaign group MedConfidential, Sam Smith, said:
“Patients care what happens to their data and are wary about how it could be used beyond the context of their healthcare, and so simple, complete, accessible and truthful explanations to patients are necessary.”
The Care.data scheme was terminated thanks to the Department of Health in England.
The decision was made that the programme will be terminated based on the publication of two reviews on data security by Dame Fiona and the Care Quality Commission on English healthcare, both on recommendations of safeguarding patient data and dealing with NHS data.
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