Penfold Robert B, Yoo Hong Il, Richards Julie E, Crossnohere Norah L, Johnson Eric, Pabiniak Chester J, Renz Anne D, Campoamor Nicola B, Simon Gregory E, Bridges John F P
Kaiser Permanente Washington Health Research Institute, Seattle, WA 98101-1466, United States.
Loughborough Business School, Loughborough University, Loughborough, Leicestershire LE11 3TU, United Kingdom.
JAMIA Open. 2024 Oct 21;7(4):ooae113. doi: 10.1093/jamiaopen/ooae113. eCollection 2024 Dec.
Individual-level information about negative life events (NLE) such as bankruptcy, foreclosure, divorce, and criminal arrest might improve the accuracy of machine learning models for suicide risk prediction. Individual-level NLE data is routinely collected by vendors such as Equifax. However, little is known about the acceptability of linking this NLE data to healthcare data. Our objective was to assess preferences for linking external NLE data to healthcare records for suicide prevention.
We conducted a discrete choice experiment (DCE) among Kaiser Permanente Washington (KPWA) members. Patient partners assisted in the design and pretesting of the DCE survey. The DCE included 12 choice tasks involving 4 data linking program attributes and 3 levels within each attribute. We estimated latent class conditional logit models to derive preference weights.
There were 743 participants. Willingness to link data varied by type of information to be linked, demographic characteristics, and experience with NLE. Overall, 65.1% of people were willing to link data and 34.9% were more private. Trust in KPWA to safeguard data was the strongest predictor of willingness to link data.
Most respondents supported linking NLE data for suicide prevention. Contrary to expectations, People of Color and people who reported experience with NLEs were more likely to be willing to link their data.
A majority of participants were willing to have their credit and public records data linked to healthcare records provided that conditions are in place to protect privacy and autonomy.
关于负面生活事件(NLE)的个人层面信息,如破产、止赎、离婚和刑事逮捕,可能会提高自杀风险预测机器学习模型的准确性。个人层面的NLE数据通常由益百利等供应商收集。然而,对于将这些NLE数据与医疗数据相链接的可接受性却知之甚少。我们的目标是评估将外部NLE数据与医疗记录相链接以预防自杀的偏好。
我们在华盛顿凯撒医疗集团(KPWA)的成员中进行了一项离散选择实验(DCE)。患者合作伙伴协助了DCE调查的设计和预测试。DCE包括12个选择任务,涉及4个数据链接计划属性,每个属性有3个水平。我们估计了潜在类别条件logit模型以得出偏好权重。
共有743名参与者。链接数据的意愿因要链接的信息类型、人口统计学特征和NLE经历而异。总体而言,65.1%的人愿意链接数据,34.9%的人更注重隐私。对KPWA保护数据的信任是链接数据意愿的最强预测因素。
大多数受访者支持为预防自杀而链接NLE数据。与预期相反,有色人种和报告有NLE经历的人更有可能愿意链接他们的数据。
只要有保护隐私和自主权的条件,大多数参与者愿意将他们的信用和公共记录数据与医疗记录相链接。