Factors Associated With Willingness to Share Health Information: Rapid Review

Abstract

Background To expand research and strategies to prevent disease, comprehensive and real-time data are essential. Health data are increasingly available from platforms such as pharmaceuticals, genomics, health care imaging, medical procedures, wearable devices, and internet activity. Further, health data are integrated with an individual’s sociodemographic information, medical conditions, genetics, treatments, and health care. Ultimately, health information generation and flow are controlled by the patient or participant; however, there is a lack of understanding about the factors that influence willingness to share health information. A synthesis of the current literature on the multifactorial nature of health information sharing preferences is required to understand health information exchange. Objective The objectives of this review are to identify peer-reviewed literature that reported factors associated with health information sharing and to organize factors into cohesive themes and present a narrative synthesis of factors related to willingness to share health information. Methods This review uses a rapid review methodology to gather literature regarding willingness to share health information within the context of eHealth, which includes electronic health records, personal health records, mobile health information, general health information, or information on social determinants of health. MEDLINE and Google Scholar were searched using keywords such as electronic health records AND data sharing OR sharing preference OR willingness to share. The search was limited to any population that excluded health care workers or practitioners, and the participants aged ≥18 years within the US or Canadian context. The data abstraction process using thematic analysis where any factors associated with sharing health information were highlighted and coded inductively within each article. On the basis of shared meaning, the coded factors were collated into major themes. Results A total of 26 research articles met our inclusion criteria and were included in the qualitative analysis. The inductive thematic coding process revealed multiple major themes related to sharing health information. Conclusions This review emphasized the importance of data generators’ viewpoints and the complex systems of factors that shape their decision to share health information. The themes explored in this study emphasize the importance of trust at multiple levels to develop effective information exchange partnerships. In the case of improving precision health care, addressing the factors presented here that influence willingness to share information can improve sharing capacity for individuals and allow researchers to reorient their methods to address hesitation in sharing health information.

Patient Perspectives and Preferences for Consent in the Digital Health Context: State-of-the-art Literature Review

“…Comfort in sharing PHI declined with recipients outside the individual's circle of care, particularly with commercial or for-profit entities. There is a growing body of evidence highlighting individuals' significant discomfort in sharing their PHI with commercial and for-profit entities, primarily because of a lack of trust in these entities [10,13,[119][120][121]. This discomfort has been predominantly attributed to privacy concerns, loss of control and autonomy over one's PHI, and the potential for misuse of one's PHI (ie, for monetary gains) [13,19,121,122].…”

“…There is a growing body of evidence highlighting individuals' significant discomfort in sharing their PHI with commercial and for-profit entities, primarily because of a lack of trust in these entities [10,13,[119][120][121]. This discomfort has been predominantly attributed to privacy concerns, loss of control and autonomy over one's PHI, and the potential for misuse of one's PHI (ie, for monetary gains) [13,19,121,122]. There was an evident desire for individuals to have greater control over their PHI-sharing preferences, largely attributing these needs to past privacy experiences, health care experiences, and general health care perceptions.…”

“…With the growing volume of data produced through digital health tools, there is considerable interest in consolidating these data silos [ 10 - 12 ]. Numerous health care organizations aim to establish learning health systems to achieve these benefits; however, this work cannot be done without patients’ consent to share their PHI [ 13 ]. These systems require large amounts of PHI to develop algorithms that can guide improvements in patient safety, quality of care, and health outcomes [ 9 ].…”

“…Contextual integrity also suggests that these norms should not only consider the societal perspectives and values but also account for the individual interests and preferences of the affected parties. To understand these norms, numerous studies have explored patient willingness to consent to share PHI [ 9 , 13 , 22 ]. Factors related to willingness include individuals’ perspectives on the privacy and security of their PHI, the relevance of sharing, and how sharing PHI would directly affect the quality of care [ 9 ].…”

Patient Perspectives and Preferences for Consent in the Digital Health Context: State-of-the-art Literature Review (Preprint)

“…With the growing volume of data produced through digital health tools, there is considerable interest in consolidating these data silos [10][11][12]. Numerous health care organizations aim to establish learning health systems to achieve these benefits; however, this work cannot be done without patients' consent to share their PHI [13]. These systems require large amounts of PHI to develop algorithms that can guide improvements in patient safety, quality of care, and health outcomes [9].…”