Journal Article

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

Whittaker, Robyn, Dobson, Rosie, Wihongi, Helen

2023

Overview

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.

• Publisher: BioMed Central,BioMed Central Ltd,Springer Nature B.V,BMC
• Subject: Analysis / Artificial Intelligence / Breast cancer / Consent / Consumer perspectives / Coronaviruses / COVID-19 / Data sharing / Delivery of Health Care / Dialysis / Digitization / Emergency medical care / Emergency medical services / Health care / Health Informatics / Health information / Health Records, Personal / Health services / Hospitals / Humans / Information Systems and Communication Service / Informed consent (Medical law) / Interviews / Machine learning / Mammography / Management of Computing and Information Systems / Medical research / Medicine / Medicine & Public Health / Methods / Minority & ethnic groups / New Zealand / Online health care information services / Pandemics / Patients / Personal health / Public health / Qualitative Research / Rural populations / Urban populations