JMIR Publications

ABSTRACT

Background:

Evaluating precision medicine outcomes requires access to real-world and clinical trial data that is often siloed. Access is based on consent, and consent is based on patients’ informed preferences. Data sharing preferences have been studied through heuristic theory, often using quantitative experiments. Although rarely employed, qualitative investigations allow for in-depth exploratory study by probing for mechanisms behind disclosure behaviors. Exploring qualitative decision-making reveals not only the types of heuristics used but also how heuristics are related to risk-benefit calculus, attitudes, and context.

Objective:

This study explores how cancer patients employ heuristics when deciding whether to share their data for research.

Methods:

We first reviewed the literature on heuristics and data sharing to develop a semi-structured topic guide and a heuristic framework. We then conducted focus groups to examine health data sharing preferences of patients with cancer, living in Canada. Focus group facilitators developed and applied the topic guide to lead discussions about data-sharing preferences that revealed underlying heuristics. Two qualitative analysts coded transcripts using the heuristic framework. Transcripts were analysed using thematic analysis. Heuristic instances were grouped according to thematic constructs determined by analyst consensus.

Results:

Three focus groups were held with 19 participants in total. Analysis identified 12 heuristics underlying intentions to share data to support precision medicine research. From the thematic analysis, we identified how the heuristics of social norms and community building were expressed through altruism; the recognition, reputation, and authority heuristics led to (dis)trust in certain institutions; the need for security prompted the illusion of control and transparency heuristics; and the availability and affect heuristics influenced attitudes around risk and benefit. These thematic relationships all had impacts on the participants’ intentions to share their health data.

Conclusions:

The findings provide a novel qualitative understanding of how health data sharing decisions and preferences may be based on heuristic processing. As patients consider the extent of risks and benefits, heuristic processes influence their assessment of anticipated outcomes, which may not result in rational, truly informed consent. This study shows how considering heuristic processing when designing current consent mechanisms opens up the opportunity for more meaningful and realistic interactions with the complex decision-making context.