Consent and widespread access to personal health information for the delivery of care: a large scale telephone survey of consumers' attitudes using vignettes in New Zealand

Abstract

ObjectivesIn light of recent health policy, to examine factors which influence the public's willingness to consent to share their health information in a national electronic health record (EHR).DesignData were collected in a national telephone survey in 2008. Respondents were presented with vignettes that described situations in which their health information was shared and asked if they would consent to such sharing. The subset, consisting of the 18 vignettes that covered proving care, was reanalysed in depth using new statistical methods in 2016.SettingAdult population of New Zealand accessible by telephone landline.Participants4209 adults aged 18+ years in the full data set, 2438 of which are included in the selected subset.Main outcome measuresFor each of 18 vignettes, we measured the percentage of respondents who would consent for their information to be shared for 2 groups; for those who did not consider that their records contained sensitive information, and for those who did or refused to say.ResultsRates of consent ranged from 89% (95% CI 87% to 92%) for sharing of information with hospital doctors and nurses to 51% (47% to 55%) for government agencies. Mixed-effects logistic regression was used to identify factors which had significant impact on consent. The role of the recipient and the level of detail influenced respondents' willingness to consent (p<0.0001 for both factors). Of the individual characteristics, the biggest impact was that respondents whose records contain sensitive information (or who refused to answer) were less willing to consent (p<0.0001).ConclusionsA proportion of the population are reluctant to share their health information beyond doctors, nurses and paramedics, particularly when records contain sensitive information. These findings may have adverse implications for healthcare strategies based on widespread sharing of information. Further research is needed to understand and overcome peoples' ambivalence towards sharing their information.

Ethical Issues in Patient Data Ownership

“…Regardless of whether individuals had sensitive information on record, they were less likely to want to share sensitive information when compared with nonsensitive information [32]. A study by Whiddett et al [33] supports this finding with a 2016 study of 4209 adults in New Zealand. This survey revealed that individuals are significantly more likely to share their data with nurses, doctors, and paramedics than with government agencies.…”

“…This survey revealed that individuals are significantly more likely to share their data with nurses, doctors, and paramedics than with government agencies. In addition, individuals with sensitive information on records were significantly less likely to consent to sharing their records [ 33 ]. A large proportion of the population, especially vulnerable populations, is reluctant to share their records beyond health care professionals.…”

‘As Long as It's Used for Beneficial Things’: An Investigation of non-Māori, Māori and Young People's Perceptions Regarding the Research use of the Aotearoa New Zealand Integrated Data Infrastructure (IDI)

“…An Indian study described narratives of powerlessness in the face of potential exploitation of participants by researchers (Hate et al, 2015). Māori and people of Pacific Island ethnicity were under-represented in the only previous telephone-based study of public views on the secondary use of electronic health records (Whiddett et al, 2016). In our study, Māori participants were generally positive about sharing health data and keen on clear consent processes, but as evident from theme 2, they were also warier about misuse of data that could result in personal disadvantage or profit.…”

Ctrl-Shift: How Privacy Sentiment Changed from 2019 to 2021

“…People generally approve of sharing their data with healthcare professionals [28,49,138], university researchers within their home countries [83,45], and relevant non-profit organizations [53,45]. Those with chronic health conditions or diseases report being especially willing to consent to sharing their health data with other parties [79,28,138].…”

“…People generally approve of sharing their data with healthcare professionals [28,49,138], university researchers within their home countries [83,45], and relevant non-profit organizations [53,45]. Those with chronic health conditions or diseases report being especially willing to consent to sharing their health data with other parties [79,28,138]. For example, Goodman et al [45] find that patients with a history of cancer are more likely to want their health data to be made available to "as many research studies as possible" compared to those without cancer.…”