JMIR Publications

ABSTRACT

Background:

The COVID-19 pandemic stimulated the availability and use of population and individual health data to optimise tracking and analysis of the spread of the virus. Many health care services have had to rapidly digitalise in order to maintain the continuity of care provision. Data collection and dissemination have provided critical support to defence against the spread of the virus since the beginning of the pandemic; however, little is known about public perceptions of and attitudes towards the use, privacy and security of data.

Objective:

The goal of this study is to better understand people’s willingness to share data in the context of COVID-19.

Methods:

A web-based survey was conducted, looking at individuals’ use of and attitudes toward health data for those 18 years and older, and in particular, those with a reported diagnosis of a chronic health condition placing them most ‘at risk’ of severe COVID-19.

Results:

In total, 4,764 individuals responded to this web-based survey. 4,674 (98.1%) reported a medical diagnosis of at least 1 health condition (average 4 per person), with type 2 diabetes (2,974, 62.7%), hypertension (2,147, 45.2%) and type 1 diabetes (1,299, 27.4%) being most prominent in our sample. In general, more people are comfortable with sharing anonymised data than personally identifiable data. People reported feeling comfortable sharing data that were able to benefit others; 66% (3,121 respondents) would share personal identifiable data if its primary purpose was deemed beneficial for the health of others. Almost two-thirds (3,026; 63.9%) would consent to sharing personal, sensitive health data with government or health authority organisations. Conversely, over a quarter of respondents (1,297, 27.8%) stated they did not trust any organisation to protect their data and 54% (2,528) reported concerns about the implications of sharing personal information. Almost two-thirds (3,054, 65%) of respondents were concerned around the provisions of appropriate legislation that seeks to prevent data misuse and hold organisations accountable in the case of data misuse.

Conclusions:

Although our survey focused mainly on the views of those living with chronic health conditions, the results indicate that data sensitivity is highly contextual. More people are comfortable with sharing anonymised data than personally identifiable data. Willingness to share data also depended on the receiving body, highlighting trust as a key theme, in particular who may have access to shared personal health data and how they may be used in the future. This in turn suggests that anonymisation’s disadvantages (in terms of confirming data and correlating shared with other data) might be offset by better (wider, deeper, more accurate) sampling leading to greater validity of results. Further evidence comes from the interaction (or correlation) between these attitudinal responses and other characteristics, meaning that non-anonymised collection might lead to biased results. The nascency of legal guidance in this area suggests a need for humanitarian guidelines for data responsibility during disaster relief operations such as pandemics, and for involving the public in their development. Clinical Trial: Ethics approval was obtained from the Human Research Ethics Committee (HREC) of the University of Warwick (BSREC 144/19-20).