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The Dynamics of Healthcare Data Sharing and Its Impact on Public Health

Data sharing provides various benefits across different sectors. Well-informed providers can significantly enhance their service offerings. Within healthcare, the sharing of personal data leads to improved diagnoses and early interventions. The digitisation of health records facilitates timely access and sharing among caregivers, pharmacies, and insurance companies, streamlining billing processes.

Analysis of electronic records within the UK’s National Health Service (NHS) has yielded valuable insights. For instance, a reduction in severe asthma attacks among children was observed after the smoking ban in Scottish bars. It also underscored late detection as a key factor in England’s poor cancer survival rates. Access to data not only enhances services by providing personalised health advice but also alleviates the strain on limited public resources due to a growing number of patients.

Despite the sensitivity of healthcare data, a global business thrives on the collection and sale of health data and prescription information. By 2011, the healthcare industry had amassed a colossal 150 exabytes of care data in electronic health records. Databases play a pivotal role in almost every facet of healthcare practice and research.

In the European Union, the General Data Protection Regulation (GDPR) mandates individuals’ consent for data sharing. While most clinical trial participants express willingness to share their data, perceived risks dominate the perspectives of those lacking trust or fearing identification or data theft.

Despite heightened privacy concerns, individuals continue to share personal information. However, significant healthcare data breaches may threaten perceptions and willingness to share. The novelty lies in scaling down theoretical concepts and applying them specifically to healthcare data sharing, offering insights to foster greater trust for informed consent.

Only two significant predictors of data disclosure likelihood are necessary: “perceived information risk” (PIR) and “perceived societal benefit” (PSB). Despite risks dominating benefits, individuals rarely opt out of healthcare data sharing, revealing the privacy paradox.

Notably, risk (PIR) and benefit (PSB) emerge as the most influential predictors in regression analysis, simplifying the understanding of individuals’ intention to share healthcare data.

The results align with the concept of the privacy calculus, where individuals evaluate both risk and benefit beliefs when deciding to disclose private information. Similar cognitive assessment processes are identified in various theoretical frameworks used in information privacy research.

The negative correlation between risk and benefit, with intention dominating the high-benefit low-risk end, aligns with social contract theory. Individuals continue participating in a social contract as long as perceived benefits outweigh perceived risks, grounded in the principle of distributive justice.

Three possible interpretations emerge for why people willingly share personal data in healthcare. Individuals may be benevolent, with perceived social benefits outweighing perceived risk. Assumed naivety suggests underestimating risks until benefits become relevant. People may share data due to ignorance of risks.

Contrary to expectations, complex measures show no significant contribution when used alongside PIR and PSB in predicting an individual’s intention. The decision-making process for data sharing is simpler than anticipated in the literature. To facilitate informed choices, providing individuals with a clear risk versus benefit assessment is crucial.

In conclusion, when it comes to sharing personal health information, people primarily consider the risks and benefits involved. Simple factors like risk and benefit perceptions are sufficient to understand this. Moreover, individuals may share their health data to help others due to underestimated risks, or even lack of awareness about potential risks.

Insights by: Dr Jay Wasim and Parnia Ahmed