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. 2023 Apr 11;23(1):66.
doi: 10.1186/s12911-023-02143-1.

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

Rosie Dobson  1   2 , Helen Wihongi  3   4 , Robyn Whittaker  5   3
Affiliations

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

Rosie Dobson et al. BMC Med Inform Decis Mak. .

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.

Keywords: Consumer perspectives; Data sharing; Health information.

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Conflict of interest statement

None.

Figures

Fig. 1
Fig. 1
Coding tree of themes and subthemes
See this image and copyright information in PMC

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References

    1. Tosoni S, Voruganti I, Lajkosz K, et al. Patient consent preferences on sharing personal health information during the COVID-19 pandemic: “the more informed we are, the more likely we are to help. BMC Med Ethics. 2022;23:53. doi: 10.1186/s12910-022-00790-z. - DOI - PMC - PubMed
    1. Grande D, Mitra N, Marti XL, et al. Consumer views on using Digital Data for COVID-19 Control in the United States. JAMA Netw Open. 2021;4(5):e2110918. doi: 10.1001/jamanetworkopen.2021.10918. - DOI - PMC - PubMed
    1. Khatatbeh M, Gharaibeh LF, Khabour OF, Abu-Farha RK, Alzoubi KH. Jordanian views regarding sharing of medical data for research: A cross-sectional study during COVID-19 pandemic. Plos one. 2022 Mar 21;17(3):e0265695. - PMC - PubMed
    1. Romero RA, Young SD. Ethical perspectives in sharing digital data for public health surveillance before and shortly after the onset of the Covid-19 pandemic. Ethics & behavior. 2022 Jan;2(1):22–31. - PMC - PubMed
    1. Aitken M, Jorre JD, Pagliari C, Jepson R, Cunningham-Burley S. Public responses to the sharing and linkage of health data for research purposes: a systematic review and thematic synthesis of qualitative studies. BMC Med Ethics. 2016 Dec;17(1):1–24. - PMC - PubMed

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