JMIR Publications

ABSTRACT

Background:

Canadians are increasingly gaining online access to digital health services and expect to access their data from these services through a central patient access channel. Implementing data sharing between these services will require patient trust—fostered through meaningful consent and consent management. Understanding user consent requirements and information needs is necessary in developing a trustworthy and transparent consent management system.

Objective:

The objective of this study was to understand (1) consent management preferences and (2) information needs to support meaningful consent.

Methods:

A secondary analysis of a national survey was completed using a retrospective descriptive study design. The 2019 cross-sectional survey used a series of vignettes and consent scenarios to develop a deeper understanding of Canadians’ privacy perspectives and preferences for consent management. Non-parametric tests, and logistic regression analyses were conducted to identify differences and associations between the various factors.

Results:

Of the 1017 total responses, 70.4% (716/1017) of participants self-identified as potential users. Almost all (672/716, 93.8%) felt the ability to control their data was important, while 53.8% (385/716) believed that an “all or none” control at the data source level was adequate. Most users prefer new data sources to be accessible by health care providers (546/716, 76.3%) and delegated parties (389/716, 54.3%) by default. Prior digital health use was associated with greater odds of granting default access when compared with no prior use, with the greatest odds of granting default access to digital health service providers (OR 2.17, 95% CI 1.36-3.46). From a list of nine information elements found in consent forms, users selected an average of 5.64 (SD 2.68) and 5.54 (SD 2.85) items to feel informed in consenting to data access by care partners, and commercial digital health service providers respectively. There was no significant difference in number of items selected between the two scenarios (p>0.05); however, there were significant differences (p<0.05) in information types that were selected between the scenarios.

Conclusions:

Many survey participants would register and use a patient access channel and believe the ability to control data access is important, especially as it pertains to access by those outside their care. These findings suggest a broad “all-or-none” approach by data source may be accepted; however, approximately one-fifth of users were unable to decide. Although vignettes were used to introduce the questions, this study showed that more context is required for users to make an informed consent decision. Understanding their information needs will be critical, as these needs varied with use case, highlighting the importance of prioritizing and tailoring information to enable meaningful consent.