Why Do You Need This?

Rudnicka, Anna; Cox, Anna L.; Gould, Sandy J. J.

doi:10.1145/3290605.3300622

Cited by 12 publications

(6 citation statements)

References 24 publications

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“…A number of papers have empirically demonstrated that certain design features, such as variety of customization options [34], high immediacy levels [35], perception of information control [34,36], exposure to calls of action [37], videos including female narrators combined with vibrant colors and light musical tones [38], a dynamic privacy score [39], norm-shaping design patterns [40], as well as contextual cues amplifying or downplaying privacy concerns [41], can increase the disclosure of personal information. Also, studies have shown that persuasive messages that are more positively framed or include higher argument strength [42] as well as motivational messages can increase the disclosure of personal sensitive information [43]; while initially participants reacted Compensation of different types, trust (excerpt) Participants did not claim to be more willing to provide information in the presence of incentives, but in fact, as indicated by their behavior, were more inclined to do so.…”

Section: Plos Onementioning

confidence: 99%

Privacy nudges for disclosure of personal information: A systematic literature review and meta-analysis

et al. 2021

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Objective Digital nudging has been mooted as a tool to alter user privacy behavior. However, empirical studies on digital nudging have yielded divergent results: while some studies found nudging to be highly effective, other studies found no such effects. Furthermore, previous studies employed a wide range of digital nudges, making it difficult to discern the effectiveness of digital nudging. To address these issues, we performed a systematic review of empirical studies on digital nudging and information disclosure as a specific privacy behavior. Method The search was conducted in five digital libraries and databases: Scopus, Google Scholar, ACM Digital Library, Web of Science, and Science Direct for peer-reviewed papers published in English after 2006, examining the effects of various nudging strategies on disclosure of personal information online. Results The review unveiled 78 papers that employed four categories of nudge interventions: presentation, information, defaults, and incentives, either individually or in combination. A meta-analysis on a subset of papers with available data (n = 54) revealed a significant small-to-medium sized effect of the nudge interventions on disclosure (Hedges’ g = 0.32). There was significant variation in the effectiveness of nudging (I2 = 89%), which was partially accounted for by interventions to increase disclosure being more effective than interventions to reduce disclosure. No evidence was found for differences in the effectiveness of nudging with presentation, information, defaults, and incentives interventions. Conclusion Identifying ways to nudge users into making more informed and desirable privacy decisions is of significant practical and policy value. There is a growing interest in digital privacy nudges for disclosure of personal information, with most empirical papers focusing on nudging with presentation. Further research is needed to elucidate the relative effectiveness of different intervention strategies and how nudges can confound one another.

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Section: Plos Onementioning

confidence: 99%

Privacy nudges for disclosure of personal information: A systematic literature review and meta-analysis

et al. 2021

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“…Another barrier to participation is that willingness to share data depends strongly on the data type [ 32 , 47 , 67 ], even though there are divergent findings in the literature about which data types people feel most uncomfortable sharing [ 37 , 38 , 42 , 61 - 65 ]. For example, previous studies with young adults have observed a high willingness to donate DNA samples [ 33 , 34 ], but 2 extensive worldwide surveys have observed the opposite [ 36 , 44 ].…”

Section: Discussionmentioning

confidence: 99%

“…Questions in this group concerned how comfortable or uncomfortable participants would feel about sharing different deidentified data sources for a research repository, as previous studies have shown that willingness to share personal health data varies according to the data source [ 61 - 63 ]. Data sources were grouped as (1) biospecimen samples and input data provided through health questionnaires (online or in-person); and (2) passive data collected through smartphone or wearable devices, without end user input.…”

Section: Methodsmentioning

confidence: 99%

Public Attitudes to Digital Health Research Repositories: Cross-sectional International Survey

2021

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Background Digital health research repositories propose sharing longitudinal streams of health records and personal sensing data between multiple projects and researchers. Motivated by the prospect of personalizing patient care (precision medicine), these initiatives demand broad public acceptance and large numbers of data contributors, both of which are challenging. Objective This study investigates public attitudes toward possibly contributing to digital health research repositories to identify factors for their acceptance and to inform future developments. Methods A cross-sectional online survey was conducted from March 2020 to December 2020. Because of the funded project scope and a multicenter collaboration, study recruitment targeted young adults in Denmark and Brazil, allowing an analysis of the differences between 2 very contrasting national contexts. Through closed-ended questions, the survey examined participants’ willingness to share different data types, data access preferences, reasons for concern, and motivations to contribute. The survey also collected information about participants’ demographics, level of interest in health topics, previous participation in health research, awareness of examples of existing research data repositories, and current attitudes about digital health research repositories. Data analysis consisted of descriptive frequency measures and statistical inferences (bivariate associations and logistic regressions). Results The sample comprises 1017 respondents living in Brazil (1017/1600, 63.56%) and 583 in Denmark (583/1600, 36.44%). The demographics do not differ substantially between participants of these countries. The majority is aged between 18 and 27 years (933/1600, 58.31%), is highly educated (992/1600, 62.00%), uses smartphones (1562/1600, 97.63%), and is in good health (1407/1600, 87.94%). The analysis shows a vast majority were very motivated by helping future patients (1366/1600, 85.38%) and researchers (1253/1600, 78.31%), yet very concerned about unethical projects (1219/1600, 76.19%), profit making without consent (1096/1600, 68.50%), and cyberattacks (1055/1600, 65.94%). Participants’ willingness to share data is lower when sharing personal sensing data, such as the content of calls and texts (1206/1600, 75.38%), in contrast to more traditional health research information. Only 13.44% (215/1600) find it desirable to grant data access to private companies, and most would like to stay informed about which projects use their data (1334/1600, 83.38%) and control future data access (1181/1600, 73.81%). Findings indicate that favorable attitudes toward digital health research repositories are related to a personal interest in health topics (odds ratio [OR] 1.49, 95% CI 1.10-2.02; P=.01), previous participation in health research studies (OR 1.70, 95% CI 1.24-2.35; P=.001), and awareness of examples of research repositories (OR 2.78, 95% CI 1.83-4.38; P<.001). Conclusions This study reveals essential factors for acceptance and willingness to share personal data with digital health research repositories. Implications include the importance of being more transparent about the goals and beneficiaries of research projects using and re-using data from repositories, providing participants with greater autonomy for choosing who gets access to which parts of their data, and raising public awareness of the benefits of data sharing for research. In addition, future developments should engage with and reduce risks for those unwilling to participate.

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“…Questions in this group concerned how comfortable or uncomfortable participants would feel about sharing different deidentified data sources for a research repository, as previous studies have shown that willingness to share personal health data varies according to the data source [61][62][63]. Data sources were grouped as (1) biospecimen samples and input data provided through health questionnaires (online or in-person); and (2) passive data collected through smartphone or wearable devices, without end user input.…”

Section: Willingness To Share Datamentioning

confidence: 99%

Public Attitudes to Digital Health Research Repositories: Cross-sectional International Survey (Preprint)

Vilaza¹,

Coyle²,

Bardram³

2021

Preprint

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BACKGROUND Digital health research repositories propose sharing longitudinal streams of health records and personal sensing data between multiple projects and researchers. Motivated by the prospect of personalizing patient care (precision medicine), these initiatives demand broad public acceptance and large numbers of data contributors, which is challenging. OBJECTIVE This study investigates public attitudes towards possibly contributing to digital health research repositories in order to identify factors for their acceptance and to inform future developments. METHODS A cross-sectional online survey was conducted from March 2020 to December 2020. Recruitment targetted young adults in Denmark and Brazil. Through closed-ended questions, the survey examined: participants' willingness to share different data types, data access preferences, reasons for concern and motivations to contribute. The survey also collected information about participants' demographics, level of interest in health topics, previous participation in health research, awareness of examples of existing research data repositories, and current attitudes about digital health research repositories. Data analysis consisted of descriptive frequency measures and statistical inferences (bivariate associations and logistic regressions). RESULTS The analysis of 1600 responses from 583 participants in Denmark and 1017 in Brazil shows a vast majority very motivated by helping future patients (1366/1600, 85.37%), helping researchers (1253/1600, 78.31%), and receiving results about themselves (1170/1600, 73.12%), yet very concerned about unethical projects (1219/1600, 76.18%), profit-making without consent (1096/1600, 68.5%) and cyber-attacks (1055/1600, 65.93%). Participants’ willingness to share data is lower when it comes to sharing personal sensing data, such as the content of calls and texts (1206/1600, 75.37%), in contrast to more traditional health research information, but those uncomfortable sharing data about mental illness worry about being discriminated against (OR 2.26, 95%CI, 1.66-3.07, P<.001). Only 13.43% (215/1600) find it desirable to grant data access to private companies, and most would like to stay informed about which projects use their data (1334/1600, 83.37%) and control future data access (1181/1600, 73.81%). Findings indicate that favorable attitudes towards digital health research repositories are related to personal interest in health topics (OR 1.49, 95%CI, 1.10-2.02, P=.01), previous participation in health research studies (OR 1.70, 95%CI, 1.24-2.35, P=.001), and awareness of examples of research repositories (OR 2.78, 95%CI, 1.83-4.38, P<.001). CONCLUSIONS This study reveals essential factors for acceptance and willingness to share personal data with digital health research repositories. Implications include the importance of being more transparent about the goals and beneficiaries of research projects using and re-using data from repositories, providing participants with greater autonomy for choosing who gets access to which parts of their data, and raising public awareness of the benefits of data sharing for research. In addition, future developments should engage with and reduce risks for those unwilling to participate so that personalized medicine's potential benefits can be fairly distributed.

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Why Do You Need This?

Cited by 12 publications

References 24 publications

Privacy nudges for disclosure of personal information: A systematic literature review and meta-analysis

Privacy nudges for disclosure of personal information: A systematic literature review and meta-analysis

Public Attitudes to Digital Health Research Repositories: Cross-sectional International Survey

Public Attitudes to Digital Health Research Repositories: Cross-sectional International Survey (Preprint)

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