Patient perspectives on the use of health information

BACKGROUND: The digitalisation of health records generates significant individual-level data that hold great potential for research and practice. However, it remains unclear how healthcare consumers in Aotearoa New Zealand feel about the use of their health information beyond their own care. Understanding how patients want their own health information accessed/used by others is vital to ensure health services and researchers use data in a patient-informed manner. AIM: This survey aimed to investigate patient perspectives, including preferences, needs and concerns, on the use of, and access to, individual healthcare information. METHOD: A mixed-methods cross-sectional survey of adult patients (n=1,377) in Waitemata District Health Board inpatient and outpatient services during November-December 2020. The survey was online and on paper and available in 10 languages. RESULTS: Over 80% of participants were comfortable with their health information being used across the scenarios presented (range: 81-89%). Maori were significantly more likely than non-Maori to be comfortable with their health information being combined with the health information of others to better understand population needs (p=0.006). The level of comfort with the use of individual health information was related to assurances that its use was for public good, data were stored securely, individual privacy was maintained, the information was accurate and there was communication on how it was used. DISCUSSION: This study has shown that most healthcare consumers are comfortable with the health service using their de-identified health information beyond their care if it benefits others.