People’s patient records play a vital role in informing medical research and changes to health and social care. Advances in understanding diseases and developing treatments have been possible because of access to patient data, resulting in positive benefits to people. Today, with the help of technology, researchers are making huge advancements in areas such as genomics, which could revolutionise health and care for future generations.
However, a number of recent scandals involving the use of people’s data have eroded public trust in the ability of organisations to hold data appropriately. Issues like the use of data collected by Cambridge Analytica and Facebook and the data breach at telecoms company TalkTalk have all kept the issue in the spotlight in recent years.
Data scandals have also hit the NHS. For example, the malicious ‘Wannacry’ hacking scandal in May 2017 affected around a third of hospitals across England, resulting in thousands of cancelled operations.
This comes at a time when more control than ever is being given to people as to how their data is used by others. On 25 May 2018 the European Union’s General Data Protection Regulations (GDPR) will come in to force. On the same day the NHS too will give people the option to opt-out of their confidential information being used for anything other than direct care.
In order to understand more about people’s attitudes towards how their data is used, in March Healthwatch England commissioned ComRes to survey 2,000 adults in the UK about their opinions.