The public’s willingness to share their health records has witnessed a sharp drop, a new Imperial College London analysis has revealed.

Survey responses collected from more than 3,000 people across the UK and US show that in late 2018, some 95% of people were not willing to share their medical data with commercial industries. This contrasts with a Wellcome study conducted in 2016 which found that half of UK respondents were willing to do so. 

In addition, the research from Imperial’s Institute of Global Health Innovation found that a quarter of UK respondents weren’t willing to share their health data with their doctor, and almost two-thirds of people in the US wouldn’t do so. Half of people in the UK, however, would share their records with academic or medical research institutions, compared to just a quarter of people in the US. 

"As we move towards more data-driven healthcare, it is vital that health systems communicate about how patients’ data will be used in an open and transparent way." Dr Saira Ghafur Digital health lead, IGHI

The apparent high levels of distrust warrant the need for secure regulatory standards and transparency over the uses and sharing of medical data, the authors conclude. The researchers are therefore calling for initiatives to improve understanding of how medical data is used and for what purposes, so that critical research to improve health and care that depends on access to health information is not jeopardised. 

Dr Saira Ghafur, study author and digital health lead at the Institute of Global Health Innovation, said: “Our research has highlighted the importance of trust when it comes to health data sharing. As we move towards more data-driven healthcare, it is therefore vital that health systems communicate about how patients’ data will be used in an open and transparent way, and ensure that data is shared safely and securely.”

The findings have been published in Lancet Digital Health. 

A controversial topic

Health systems hold a wealth of patient data that is critical to improving understanding and disease and can accelerate research efforts to improve health and care. 

Yet health data sharing is rife with controversy and many people are concerned about how and why their data will be used. There has also been a number of high-profile cyber attacks affecting health systems, such as the WannaCry ransomware attack in 2017 that severely impacted the NHS. This has raised questions over the security of health data. 

To better understand the public’s views on health data sharing, access and use, the Imperial team launched a YouGov poll in the UK and US. Both countries have made major investments in health IT infrastructure but differ substantially in the way they deliver care. 

Health data sharing: access and attitudes

The nationally-representative survey data reveal that willingness to share health data varied considerably across different recipients. Respondents were most willing to share their health records with their doctor (75% in the UK; 60% in the US), while least willing to share their data for commercial purposes (5% and 5.5%, respectively). In the UK, 10% of respondents wouldn’t share their data at all, with a similar attitude in the US (15%). 

The data also reveal contrasts in access to electronic health data and suggest their use is not widespread. Three times as many respondents in the US stated that they have access to their electronic health records, with females and individuals over the age of 55 reporting highest access across both countries. In the UK, across any age group, fewer than 17% of respondents reported that they have access to their electronic records. This could relate to barriers to access, the authors suggest, including poor usability, lack of access to technology or mistrust. 

The research did not collect data on demographics other than age and sex, nor socio-economics status, which previous research has suggested can influence people’s willingness to share data. The researchers will therefore conduct a more in-depth analysis of these factors in future studies, which will look at the impact COVID-19 has had on attitudes towards data sharing.