What influences a person’s willingness to share health information for both direct care and uses beyond direct care? Findings from a focus group study in Ireland

Abstract

Background: The sharing of health information is invaluable for direct care provision and reasons beyond direct care, such as for health services management. Previous studies have shown that willingness to share health information is influenced by an individual’s trust in a healthcare professional or organisation, privacy and security concerns, and fear of discrimination based on sensitive information. The importance of engaging the public in policy and practice development relating to the use and sharing of health information has been identified as an essential step for countries to take. This study’s aim was to examine the factors that influence the Irish public’s willingness to share their health information as part of a national public engagement on health information. Methods: A qualitative study using online focus groups was conducted as part of a wider national public engagement on health information. Participants were purposively recruited from a combination of public, patient, and service user groups in Ireland. Focus group interviews were audio-recorded, transcribed verbatim and analysed using inductive content analysis. Results: In total, 85 participants took part in 14 focus groups between January and March 2021. Two major themes were identified, trust and personal and public benefits of sharing health information. The ability to exercise control over personal information, perceived transparency of the process, and the extent to which the healthcare service was viewed as confidential, all influenced the level of trust a person held. Perceived benefits were influenced by the extent to which participants believed information sharing would support improved care or provide broader public benefit, and balanced against the potential for personal harm. Conclusions: The findings allow for new insights into the views of the public on the use and sharing of personal health information and can be used to inform the development of a consent model for health information.

Building public trust and confidence in secondary use of health data for healthcare improvement and research: a qualitative study pre-protocol

“…The three identified factors that shaped participants’ level of trust were: (i) their ability to exercise control over personal data that they believed belongs to them, (ii) the perceived transparency of the data sharing processes, and (iii) the perceived confidentiality of the healthcare service. This study ( Flaherty et al ., 2022 ) was part of a wider mixed methods study of national public engagement on health information carried out by the Health Information and Quality Authority (HIQA) in partnership with the Department of Health and the Health Service Executive (HSE) (2021), conducted following the Conti cyber attack ( PwC, 2021 ) on the HSE in Ireland. This mixed methods study ( HIQA, 2021 ) suggested that the Irish public is overwhelmingly in support of using health data for secondary purposes, upon the condition that appropriate safeguards are in place.…”

“…The willingness to share data was closely connected to public trust in the individual or the organisation that managed their data, and their perceived competence to keep the data safe. Trust also emerged as a major theme from a recent qualitative study that examined the factors that influenced the public’s willingness to share their health data ( Flaherty et al ., 2022 ). The three identified factors that shaped participants’ level of trust were: (i) their ability to exercise control over personal data that they believed belongs to them, (ii) the perceived transparency of the data sharing processes, and (iii) the perceived confidentiality of the healthcare service.…”

Building public trust and confidence in secondary use of health data for healthcare improvement and research: a qualitative study pre-protocol

“…The willingness to share data was closely connected to public trust in the individual or the organisation that managed their data, and their perceived competence to keep the data safe. Trust also emerged as a major theme from a recent qualitative study that examined the factors that influenced the public's willingness to share their health data (Flaherty et al, 2022). The three identified factors that shaped participants' level of trust were: (i) their ability to exercise control over personal data that they believed belongs to them, (ii) the perceived transparency of the data sharing processes, and (iii) the perceived confidentiality of the healthcare service.…”

“…The three identified factors that shaped participants' level of trust were: (i) their ability to exercise control over personal data that they believed belongs to them, (ii) the perceived transparency of the data sharing processes, and (iii) the perceived confidentiality of the healthcare service. This study (Flaherty et al, 2022) was part of a wider mixed methods study of national public engagement on health information carried out by the Health Information and Quality Authority (HIQA) in partnership with the Department of Health and the Health Service Executive (HSE) (2021), conducted following the Conti cyber attack (PwC, 2021) on the HSE in Ireland. This mixed methods study (HIQA, 2021) suggested that the Irish public is overwhelmingly in support of using health data for secondary purposes, upon the condition that appropriate safeguards are in place.…”