Privacy, Trust, and the Public's Comfort with Sharing Health Data with Third-Party Commercial Companies

Abstract

Healthcare partnerships with third-party commercial companies have been met with reservations from the public about the privacy of health information and concerns about how this data is used. While research points to the need to provide patients greater control over the use of their data, or notification of data use, it is not yet clear how to move forward with this effort while balancing the needs of researchers for quality data sets. To better understand and characterize the public’s comfort with third-party commercial companies and perhaps manage and address the public’s concern, in this dissertation I examine the relationships between the public’s comfort with sharing health data with third-party commercial companies for patient and business purposes in relation to the public’s comfort with demographic characteristics, perceived healthcare access, trust in the health system and trust in providers, privacy concerns, and altruism. I also explore the effect of a past data breach and concern about recent data breach events, comfort with researchers, quality analysts, commercial companies, and law enforcement, confidence in existing health data laws, and desire for greater control over health data or notification of data use on the public’s comfort with sharing health data with third-party commercial companies.

In this dissertation I present the results of a survey of the US public (n = 1841) to assess comfort with sharing health data with third-party commercial companies for patient or business purposes. Weighted Ordinary Least Squares (OLS) Regression analysis was used to first estimate the relationship between comfort with third-party commercial companies for patient and business purposes (dependent variables) and the aforementioned independent variables, followed by stepwise regression modeling to estimate a full model of contributing factors to the public’s comfort with sharing health data with third-party commercial companies.

In the final analysis, variables that were significantly (p<0.05) related to comfort with data sharing for patient purposes included: comfort with researchers and commercial companies, comfort with law enforcement accessing genetic data, altruism, individuals between the ages of 45-59, and educational attainment. Statistically significant variables associated with data sharing for business purposes included: comfort with researchers, quality analysts, and commercial companies, comfort with law enforcement accessing genetic data, concern about Memorial Sloan Kettering’s startup company, Paige.AI, and employment status. The most salient factors associated with respondent’s comfort with sharing health data with third-party commercial companies for both patient and business purposes were trust in the health system, confidence in existing laws and policies, and desire for notification.

The results of this study suggest that increasing trust in the health system may have a greater impact on the public’s comfort than efforts to address privacy concerns alone. Desire for notification was also more important to the public’s comfort with third-party commercial companies than the desire for control over health data. Patients may be better served by focusing on efforts to build trust in healthcare organizations and by providing notification of health data use instead of more granular control over health data use.