Exploring patient perspectives on the secondary use of their personal health information: an interview study

Abstract

Background The increased digitalisation of health records has resulted in increased opportunities for the secondary use of health information for advancing healthcare. Understanding how patients want their health information used is vital to ensure health services use it in an appropriate and patient-informed manner. The aim of this study was to explore patient perceptions of the use of their health information beyond their immediate care. Methods Semi-structured in-depth interviews were conducted with current users of health services in Aotearoa New Zealand. Different scenarios formed the basis of the discussions in the interviews covering different types of information use (current practice, artificial intelligence and machine learning, clinical calculators, research, registries, and public health surveillance). Transcripts were analysed using thematic analysis. Results Twelve interviews were conducted with individual’s representative of key ethnicity groups and rural/urban populations, and at the time of recruitment, had been accessing a diverse range of health services. Participants ranged from high users of health care (e.g., weekly dialysis) through to low users (e.g., one-off presentation to the emergency department). Four interrelated overarching themes were identified from the transcripts describing the main issues for participants: helping others, sharing of data is important, trust, and respect. Conclusions People currently engaging with health services are supportive of their health information being used to help others, advance science, and contribute to the greater good but their support is conditional. People need to be able to trust the health service to protect, care for, and respect their health information and ensure no harm comes from its use. This study has identified key considerations for services and researchers to reflect on when using patient health information for secondary purposes to ensure they use it in a patient-informed way. Trial registration NA.

An example of governance for AI in health services from Aotearoa New Zealand

“…Proposals need to demonstrate that they understand the potential benefits, and perhaps more importantly, identify any potential risks for consumers in order to satisfy the consumer representation on the AIGG. Findings from the patient survey 20 , showed that there needed to be transparency and communication around what projects are using aggregated data. Therefore, ensuring that there is clear public communication will, in part, be the responsibility of the AIGG as well as the service intending to develop or implement the models.…”

“… A Buyer’s Guide to AI in Health and Care 19 A set of 10 questions required for making well-informed procurement decisions for AI systems. Topol The Topol Review – Preparing the healthcare workforce to deliver the digital future 20 An independent review conducted for the NHS on key digital technologies, barriers to its adoption and potential solutions to these barriers. Aotearoa NZ specific Hudson et al Te Ara Tika Guidelines for Māori Research Ethics 15 Provides a framework for researchers to work with Māori ensuring research is undertaken based on tikanga and matauranga Māori (Māori ethical principles and philosophies).…”

“… Data Protection and Use Policy 26 Policy statement and guidelines around collection and use of data or information. StatsNZ Algorithm Assessment Report 2018 27 A cross-government review of how government agencies are using algorithms in NZ. …”

“…We conducted a cross-sectional survey and in-depth interviews to understand the perspectives of our healthcare service users regarding the secondary use of their personal health information for purposes such as AI. Inpatients and outpatients ( n = 1377) were surveyed about what they expected the organisation was already doing with their health information and what their level of comfort was with secondary use including aggregation of data for service improvement and for the benefit of others 20 . The vast majority were comfortable with the aggregation of their data with others for the purposes of improving health care services for the future, with the conditions that it would produce benefit for others, their privacy would be maintained, data would still be secure, and appropriate governance or approvals were in place.…”

Enhancing public health research: a viewpoint report on the transition to secure, cloud-based systems

“…The individual and population metrics gathered can transform public health research, providing valuable insights into population health, disease trends, and effective interventions. Despite advancements in data availability, collection, and analysis ( 9 – 13 ), the use of PHI for research has been hindered by storage, cybersecurity, and data governance challenges ( 6 – 8 , 14 – 18 ). PHI has traditionally been stored in local databases or filesystems which lack sufficient cybersecurity and data governance.…”