Between Public and Private: Electronic Health Record-sharing, Health Privacy Principles, and Hepatitis C

Area of Science:

• Public Health
• Health Informatics
• Health Law

Background:

• Hepatitis C (HCV) is associated with stigma, particularly linked to injecting drug use, leading to patient concerns about health information privacy.
• Recent data breaches and legislative changes in Australia regarding electronic health records have amplified these privacy anxieties among individuals with HCV.
• Understanding patient and stakeholder perspectives is crucial for addressing confidentiality issues in HCV health data management.

Purpose of the Study:

• To explore the experiences and concerns of individuals with a history of hepatitis C regarding the sharing of their health records.
• To examine the applicability of existing health privacy principles to hepatitis C patient data.
• To advocate for improved guidelines and legislative reforms for health record privacy in the context of hepatitis C.

Main Methods:

• Qualitative research approach utilizing interviews.
• Inclusion of participants with lived experience of hepatitis C.
• Inclusion of stakeholders involved in hepatitis C care and advocacy.

Main Results:

• Identified significant patient concerns regarding the confidentiality of health information related to hepatitis C.
• Highlighted the impact of stigma and data security issues on patient willingness to share health records.
• Revealed a need for specific privacy guidelines tailored to hepatitis C health data.

Conclusions:

• Existing health privacy principles require careful consideration and potential adaptation for hepatitis C patient records.
• Development of specific guidelines for health departments and public hospitals is essential to safeguard hepatitis C health information.
• Legislative reforms concerning health record access should incorporate enhanced privacy protections for individuals with hepatitis C.