JMIR Publications

ABSTRACT

Background:

In order to expand research and strategies to prevent disease, comprehensive and real time data is essential. Health data is increasingly available from platforms such as pharmaceuticals, genomics, healthcare imaging, medical procedures, wearable devices, and internet activity. Further, health data is integrated with an individual’s sociodemographic information, medical conditions, genetics, treatments, and healthcare. 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 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: 1) identify peer-reviewed literature that reported factors associated with health information sharing; 2) organize factors into cohesive themes, and present the synthesis in a conceptual framework 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, and mobile health information, general health information, or information on social determinants of health. Medline and Google Scholar was search 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 healthcare workers or practitioners, and the participants aged 18 years or older within the USA or Canadian context. The data abstraction process utilizing thematic analysis where any factors associated with sharing health information were highlighted and coded inductively within each article. Based on shared meaning, the coded factors were collated into major themes.

Results:

Twenty-seven 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. The themes informed a conceptual framework that outlines 3 domains associated with sharing health information from the patient or participant perspective: 1) sociodemographic factors; 2) cognitive factors; 3) contextual factors.

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 conceptual framework introduced in this report can be used as a tool to engage participants to develop effective information exchange partnerships. In the case of improving precision healthcare, addressing the factors presented here that influences willingness to share information can improve sharing capacity for individuals and allow researchers to re-orient their methods to address hesitation in sharing health information.