Ethical Views on Sharing Digital Data for Public Health Surveillance: Analysis of Survey Data Among Patients

Abstract

Digital data, including social media, wearable device data, electronic health records, and internet search data, are increasingly being integrated into public health research and policy. Because of the current issues around public distrust of science and other ethical issues in public health research, it is essential that researchers conduct ongoing studies assessing people's perceptions around and willingness to share digital data. This study aims to examine participants' social media use and comfort sharing their data with health researchers. One hundred and sixty-one participants with medical conditions were recruited through social media paid advertisements and referral from a website, and invited to complete surveys on social media use and ethical perspectives on data sharing. Eligibility criteria were adults 18 years old or older, living in the US, self-reported having been diagnosed by a physician with a medical condition, belonging to at least one social media platform, using social media at least twice a week, and owning a smartphone. Study participants were mostly female, White, and with a mean age of 36.31 years. More than one third of participants reported being very comfortable sharing electronic health data and social media data for personalized healthcare and to help others. Findings suggest that participants are very uncomfortable sharing their location and text message data with researchers, with primary concerns centered around loss of privacy, disclosing private information, and that friends, family, and others may find out that they shared text messages with researchers. We discuss the implications of this research before and after the COVID-19 pandemic, along with its potential implications for future collection of digital data for public health.

Health data sharing attitudes towards primary and secondary use of data: a systematic review

“…Three studies reported that data type determines one's willingness to share, and one of them observed that participants were in favour of sharing “traditional” health data as opposed to social media and device/app data. 64 Other insights provided by these studies suggest that people categorized as belonging to the pandemic cohort were more comfortable with sharing their PHID compared with those belonging to the pre-pandemic cohort, 65 and that privacy-preserving techniques can play an important role in someone's willingness to share. 66 , 67 …”

Measuring the willingness to share personal health information: a systematic review

“…The COVID-19 pandemic has aroused debate concerning PHI. Public health authorities recognized the need to carry out contact-tracing and personal restrictions, which entailed collecting and sharing personal data and PHI (e.g., personal localization, results of SARS-CoV-2 tests) through and between public organizations ( 17 , 33 , 34 ). Consequently, the management of PHI during the pandemic raised serious privacy concerns ( 35 , 36 ).…”

“…A direct consequence of health digitalization is the availability of a variety of data, many of which can be considered personal data concerning health or personal health information (PHI) ( 15 ). Such complex and rich data may drive the development of high-performing big data and artificial intelligence (AI) systems in health care, which are also fundamental in producing new insights for clinical research ( 16 , 17 ). For this reason, digital health and health-data management have become a priority, firmly embedded in EU policy and funding goals ( 18 ).…”

The systematic assessment of completeness of public metadata accompanying omics studies

“…Firstly, the nature of the research focus plays a crucial role. Human studies are typically subject to stricter ethical guidelines and consent requirements, and data sharing regulations [22][23][24] . These regulations may limit the extent of metadata that can be collected, whereas non-human studies may not encounter the same constraints 22,[24][25][26] .…”