Interactions with wearable devices, smartphones, and social media generate user data, which can reveal sensitive health information. Those data can be used to improve individual and community health, but also raise security and privacy concerns.1, 2 Given potential benefits alongside substantial privacy risks, it is important to evaluate how consumers view organizations and entities that collect and re-use their personal digital health data. We surveyed US consumers to assess their confidence in sixteen public and private organizations to use their digital health data responsibly.
The survey was administered in English and Spanish between July 10 and July 13, 2020. Survey respondents were sampled and recruited from the Ipsos KnowledgePanel®, a panel representative of the US population.3 Hispanic and African American respondents were oversampled. This study was considered exempt by the Institutional Review Board at the University of Pennsylvania.
Respondents rated their confidence in each of sixteen public and private organizations to use their digital health data responsibly. Ipsos provided respondents’ sociodemographic data. Additional survey items measured political ideology, health status, and whether respondents were victims of stolen digital information.
We used post-stratification weights to account for oversampling to make the findings representative of the US adult population. We used multivariable logistic regression models to estimate associations among respondent characteristics and confidence in the responsible use of digital health information. We used multiple imputation to account for incomplete responses (n = 139 [4.0%]). Analyses were conducted in Stata version 16 (StataCorp LP).
Of 6284 individuals contacted, 3497 (56%) responded. Most respondents (66–78%) responded they were at least somewhat confident in doctors’ offices, the Centers for Disease Control and Prevention, and university hospitals (Fig. 1). Fewer respondents expressed confidence in Facebook, Google, and cell phone companies (14–27%).
In multivariable models, the factor most associated with expressed confidence was political ideology (Table 1). Self-identified liberals expressed greater confidence than conservatives in university hospitals (77% vs 58%, p < 0.001), federal government (45% vs 36%, p < 0.001), and Apple (33% vs 28%, p = 0.046). Prior theft victims expressed lower confidence in university hospitals (61% vs 69%, p < 0.001), federal government (35% vs 43%, p < 0.001), and health insurance companies (44% vs 53%, p < 0.001), but not Apple. Black respondents expressed greater confidence than White respondents in insurance companies (57% vs 49%, p = 0.004) and Apple (38% vs 29%, p < 0.001), but not in university hospitals or federal government. Similarly, Hispanic respondents reported greater confidence in insurance companies (54% vs 49%, p = 0.046) and Apple (38% vs 30%, p < 0.001). Respondents aged greater than 45 generally reported lower confidence in all four organizations. Differences by income, geography, and health status were small and generally not statistically significant.
In this study, respondents reported greatest confidence in clinical and research-based organizations and public institutions including government agencies and health departments to responsibly use their digital health data. However, a majority reported low confidence in digital technology and health care companies. Such companies form the digital economy’s backbone and are large sources and users of personal digital data. Moreover, some health care organizations use tools from digital technology companies that leak patient data.4
Certain populations have greater privacy concerns — notably conservative and older respondents. Despite high confidence in university hospitals, conservatives expressed substantially lower confidence in university hospitals compared to liberals. Academic hospitals and researchers developing, testing, and deploying digital technology health programs should know about these privacy concerns. These results also highlight the importance of seeking the public’s input in designing policies to protect sensitive digital health data, particularly given evolving trust in institutions during the COVID-19 pandemic.5
Our study has limitations. We did not examine differences by other factors (e.g., education level, occupation) that may be important predictors for confidence in institutions. Additionally, dichotomizing our outcome eased interpretation but may have led to some data loss.
Since the Supreme Court overturning Roe vs. Wade, reports have raised awareness of how digital tracking by technology companies could reveal health-related behaviors (e.g., accessing reproductive health services). However, policy and conventions about privacy remain largely restricted to engagements with clinicians, hospitals, and health insurance companies. Low confidence in certain entities reflects this absence of attention and may stem from fear of unwarranted tracking,2 exploitation, and unregulated collection and use of health data. Stronger data protections and greater individual and community control6 may improve trust in health-related uses.
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KnowledgePanel A Methodological Overview. https://www.ipsos.com/sites/default/files/ipsosknowledgepanelmethodology.pdf. .
Feathers T, Fondrie-Teitler S, Waller A, Mattu S. Facebook is receiving sensitive medical information from hospital websites. June 16, 2022; https://www.statnews.com/2022/06/16/facebook-meta-pixel-hospitals-data/?utm_source=STAT+Newsletters&utm_campaign=aa73f4d163-health_tech_COPY_01&utm_medium=email&utm_term=0_8cab1d7961-aa73f4d163-124972617. .
Robert Wood Johnson Foundation & Harvard T.H. Chan School of Public Health. The Public’s Perspective on the United States Public Health System. May 2021; https://cdn1.sph.harvard.edu/wp-content/uploads/sites/94/2021/05/RWJF-Harvard-Report_FINAL-051321.pdf.
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Data Access and Responsibility
Drs. Grande and Gupta had full access to all of the data in this study and take responsibility for the integrity of the data and the accuracy of the data analysis.
This research was supported by the National Human Genome Research Institute/NIH (5R01HG009655-04). The funder had no role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; preparation, review, or approval of the manuscript; and decision to submit the manuscript for publication.
Conflict of Interest
Dr. Merchant has funding from NIH NHLBI: 5R01HL141844-02 “Digital Phenotyping and Cardiovascular Health,” NIH K24 K24 HL157621-01 Mentoring and Patient Oriented Research in Cardiovascular Health and Digital Data Science. Dr. Asch reported being a partner and part owner of VAL Health.
Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.
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Gupta, R., Sharma, M., Cannuscio, C.C. et al. Consumer Confidence in Public and Private Organizations to Use Their Digital Health Data Responsibly. J GEN INTERN MED (2022). https://doi.org/10.1007/s11606-022-07895-6