Hermansen Anna, Pollard Samantha, McGrail Kimberlyn, Bansback Nick, Regier Dean A
BC Cancer Research Institute, Vancouver, BC, Canada.
School of Population and Public Health, University of British Columbia, Vancouver, BC, Canada.
J Med Internet Res. 2024 Dec 17;26:e63155. doi: 10.2196/63155.
Evaluating precision oncology outcomes requires access to real-world and clinical trial data. Access is based on consent, and consent is based on patients' informed preferences when deciding to share their data. Decision-making is often modeled using utility theory, but a complex decision context calls for a consideration of how heuristic, intuitive thought processes interact with rational utility maximization. Data-sharing decision-making has been studied using heuristic theory, but almost no heuristic research exists in the health data context. This study explores this evidence gap, applying a qualitative approach to probe for evidence of heuristic mechanisms behind the health data-sharing preferences of those who have experienced cancer. Exploring qualitative decision-making reveals the types of heuristics used and how they are related to the process of decision-making to better understand whether consent mechanisms should consider nonrational processes to better serve patient decision-making.
This study aimed to explore how patients with cancer use heuristics when deciding whether to share their data for research.
The researchers conducted a focus group study of Canadians who have experienced cancer. We recruited participants through an online advertisement, screening individuals based on their ability to increase demographic diversity in the sample. We reviewed the literature on data-sharing platforms to develop a semistructured topic guide on concerns about data sharing, incentives to share, and consent and control. Focus group facilitators led the open-ended discussions about data-sharing preferences that revealed underlying heuristics. Two qualitative analysts coded transcripts using a heuristic framework developed from a review of the literature. Transcripts were analyzed for heuristic instances which were grouped according to sociocultural categories. Using thematic analysis, the analysts generated reflexive themes through norming sessions and consultations.
A total of 3 focus groups were held with 19 participants in total. The analysis identified 12 heuristics underlying intentions to share data. 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.
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.
评估精准肿瘤学结果需要获取真实世界数据和临床试验数据。数据获取基于同意，而同意则基于患者在决定分享其数据时的知情偏好。决策制定通常使用效用理论进行建模，但复杂的决策环境需要考虑启发式、直观思维过程与理性效用最大化之间的相互作用。数据共享决策已使用启发式理论进行研究，但在健康数据背景下几乎不存在启发式研究。本研究探讨了这一证据空白，采用定性方法探究癌症患者健康数据共享偏好背后启发式机制的证据。探索定性决策制定揭示了所使用的启发式类型以及它们与决策过程的关系，以便更好地理解同意机制是否应考虑非理性过程以更好地服务于患者决策。
本研究旨在探讨癌症患者在决定是否为研究分享其数据时如何使用启发式。
研究人员对有癌症经历的加拿大人进行了焦点小组研究。我们通过在线广告招募参与者，根据他们增加样本人口多样性的能力筛选个体。我们回顾了关于数据共享平台的文献，以制定一份关于数据共享担忧、共享激励以及同意和控制的半结构化主题指南。焦点小组主持人引导了关于数据共享偏好的开放式讨论，揭示了潜在的启发式。两名定性分析师使用从文献综述中开发的启发式框架对转录本进行编码。对转录本进行分析，找出启发式实例，并根据社会文化类别进行分组。通过主题分析，分析师通过规范会议和协商生成反思性主题。
共举行了3个焦点小组，共有19名参与者。分析确定了12种数据共享意图背后的启发式。通过主题分析，我们确定了社会规范和社区建设的启发式如何通过利他主义来表达；认可、声誉和权威启发式导致对某些机构的（不）信任；对安全的需求促使产生控制幻觉和透明度启发式；可得性和情感启发式影响了围绕风险和利益的态度。这些主题关系都对参与者分享其健康数据的意图产生了影响。
研究结果为健康数据共享决策和偏好如何基于启发式处理提供了一种新的定性理解。当患者考虑风险和利益的程度时，启发式过程会影响他们对预期结果的评估，这可能不会导致理性、真正知情的同意。本研究表明，在设计当前同意机制时考虑启发式处理如何为与复杂决策环境进行更有意义和现实的互动创造机会。
