- However, 67% say they would not be happy to share their health data indefinitely.
- Half believe they should be financially compensated for their data.
According to the World Health Organization, rapid data sharing forms the foundation for public health action during the time of the coronavirus pandemic. When it comes to the development of vaccines, the next few months following the first few stages of its distribution could be critical in terms of the overall outcome of the pandemic. In the US, your personal health record (such as name, social security number, or any other identifying number or symbol), including healthcare data, is currently protected under the Privacy Act of 1974. However, when it comes to an unprecedented global pandemic of this scale, are people willing to alter their perspectives?
MyBioSource.com, a biotechnological products distribution company, conducted a survey (3,000; ages 18+) and found that almost half (46%) of Arizonans say they would feel more comfortable sharing their personal health data with pharmaceutical companies if it meant they could improve COVID-19 vaccines. However, it appears this is based on the urgency of pandemic-based relief, as the survey found that 67% say they would not be happy to share this data indefinitely with pharmaceutical companies.
Given recent tech scandals, such as Facebook-Cambridge Analytica in 2018, it is likely public awareness surrounding the risks and consequences of data sharing has increased, which could explain the significant percentage of those who would not be willing to share their information indefinitely. However, these results also suggest the public’s attitude of urgency toward coronavirus prevention, given the catastrophic effects of the pandemic thus far.
Despite the willingness to aid coronavirus research, it appears many are cautious of ownership and authority when it comes to data sharing. The survey found 82% of respondents say they would not approve if the federal government ordered their health data to be shared with pharmaceutical companies without their approval. Thus, it would need to be done on a voluntary basis according to the majority.
Additionally, more than half (53%) of people say they should be compensated if pharmaceutical companies wanted to obtain their health data in order to improve the coronavirus vaccine. Moreover, the average person would charge these companies $557 for their health data for this purpose.
Considering the increase in use of tech-based health devices and software, such as smartwatches, fitness apps and step trackers, it is perhaps understandable why some may be wary of who this data is shared with. After all, if used on a daily basis, this data may contain a detailed record of the everyday behaviors, habits and lives of American citizens. The survey also revealed that 72% of people say tech companies should not be allowed to share any users’ personal health data with pharmaceutical companies in order to develop treatments, without their permission.