Department of Medicine, School of Medicine, University of California San Francisco, San Francisco, California, USA.
Department of Learning Health Sciences, University of Michigan Medical School, Ann Arbor, Michigan, USA.
J Am Med Inform Assoc. 2019 Oct 1;26(10):952-959. doi: 10.1093/jamia/ocz045.
Although patient generated health data (PGHD) has stimulated excitement about its potential to increase patient engagement and to offer clinicians new insights into patient health status, we know little about these efforts at scale and whether they align with patient preferences. This study sought to characterize provider-led PGHD approaches, assess whether they aligned with patient preferences, and identify challenges to scale and impact.
We interviewed leaders from a geographically diverse set of health systems (n = 6), leaders from large electronic health record vendors (n = 3), and leaders from vendors providing PGHD solutions to health systems (n = 3). Next, we interviewed patients with 1 or more chronic conditions (n = 10), half of whom had PGHD experience. We conducted content analysis to characterize health system PGHD approaches, assess alignment with patient preferences, and identify challenges.
In this study, 3 primary approaches were identified, and each was designed to support collection of a different type of PGHD: 1) health history, 2) validated questionnaires and surveys, and 3) biometric and health activity. Whereas patient preferences aligned with health system approaches, patients raised concerns about data security and the value of reporting. Health systems cited challenges related to lack of reimbursement, data quality, and clinical usefulness of PGHD.
Despite a federal policy focus on PGHD, it is not yet being pursued at scale. Whereas many barriers contribute to this narrow pursuit, uncertainty around the value of PGHD, from both patients and providers, is a primary inhibitor.
Our results reveal a fairly narrow set of approaches to PGHD currently pursued by health systems at scale.
尽管患者生成的健康数据（PGHD）激发了人们的兴趣，认为其有潜力增加患者参与度，并为临床医生提供患者健康状况的新见解，但我们对这些大规模的努力知之甚少，也不知道它们是否符合患者的偏好。本研究旨在描述以提供者为主导的 PGHD 方法，评估其是否符合患者的偏好，并确定扩大规模和产生影响的挑战。
我们采访了来自不同地理位置的医疗系统的领导者（n=6）、大型电子健康记录供应商的领导者（n=3）以及向医疗系统提供 PGHD 解决方案的供应商的领导者（n=3）。接下来，我们采访了 10 名患有 1 种或多种慢性病的患者（n=10），其中一半有 PGHD 经验。我们进行了内容分析，以描述医疗系统的 PGHD 方法，评估其与患者偏好的一致性，并确定挑战。
在本研究中，确定了 3 种主要方法，每种方法旨在支持收集不同类型的 PGHD：1）健康史，2）经过验证的问卷和调查，3）生物计量和健康活动。尽管患者的偏好与医疗系统的方法一致，但患者对数据安全和报告的价值表示担忧。医疗系统提到了与缺乏报销、数据质量和 PGHD 的临床实用性相关的挑战。
尽管联邦政策重点关注 PGHD，但它尚未大规模实施。尽管许多障碍导致了这种狭隘的追求，但患者和提供者对 PGHD 的价值存在不确定性，是主要的抑制因素。
我们的研究结果揭示了医疗系统目前大规模采用的相当有限的 PGHD 方法。
