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

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 patie...

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Autores principales: Dobson, Rosie, Wihongi, Helen, Whittaker, Robyn
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2023
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10088161/
https://www.ncbi.nlm.nih.gov/pubmed/37041588
http://dx.doi.org/10.1186/s12911-023-02143-1
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author Dobson, Rosie
Wihongi, Helen
Whittaker, Robyn
author_facet Dobson, Rosie
Wihongi, Helen
Whittaker, Robyn
author_sort Dobson, Rosie
collection PubMed
description 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. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12911-023-02143-1.
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spelling pubmed-100881612023-04-12 Exploring patient perspectives on the secondary use of their personal health information: an interview study Dobson, Rosie Wihongi, Helen Whittaker, Robyn BMC Med Inform Decis Mak Research 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. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12911-023-02143-1. BioMed Central 2023-04-11 /pmc/articles/PMC10088161/ /pubmed/37041588 http://dx.doi.org/10.1186/s12911-023-02143-1 Text en © The Author(s) 2023 https://creativecommons.org/licenses/by/4.0/Open AccessThis article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/ (https://creativecommons.org/licenses/by/4.0/) . The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/ (https://creativecommons.org/publicdomain/zero/1.0/) ) applies to the data made available in this article, unless otherwise stated in a credit line to the data.
spellingShingle Research
Dobson, Rosie
Wihongi, Helen
Whittaker, Robyn
Exploring patient perspectives on the secondary use of their personal health information: an interview study
title Exploring patient perspectives on the secondary use of their personal health information: an interview study
title_full Exploring patient perspectives on the secondary use of their personal health information: an interview study
title_fullStr Exploring patient perspectives on the secondary use of their personal health information: an interview study
title_full_unstemmed Exploring patient perspectives on the secondary use of their personal health information: an interview study
title_short Exploring patient perspectives on the secondary use of their personal health information: an interview study
title_sort exploring patient perspectives on the secondary use of their personal health information: an interview study
topic Research
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10088161/
https://www.ncbi.nlm.nih.gov/pubmed/37041588
http://dx.doi.org/10.1186/s12911-023-02143-1
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