Development of a Patient-Facing Portal for the Receipt, Interpretation and Tracking Utility of Pharmacogenetic (PGx) Data

摘要 精神疾病的药物选择一般是通过反复试验，不良反应发生率很高。 以及次佳的疗效。因此，药物遗传学(PGx)数据对于促进安全的选择是特别有益的 和有效的药物，具有成本效益，降低资源利用率，改善患者状况 参与度，有可能克服药物不依从性。然而，在精神病学领域， 患者对PGx的熟悉程度仍然很低，这表明需要改进面向患者的PGx材料。 该项目的目标是通过以下方式加强患者对其基因组信息的持续参与：a) 通过编写以消费者为中心的患者报告，增加患者对PGx结果的了解；以及b) 使用PGx引导的药物选择促进患者与提供者的沟通和共享决策 通过使用定期给药增加患者对精神症状的自我报告 实时传送给医疗保健提供者的心理测量量表。这份持续的自我报告将 作为讨论改变药物治疗方案的切入点，将向其解释 使用以消费者为中心的PGx报告的患者。持续和一致的患者-提供者沟通是 已知可以加强患者的参与度，进一步鼓励患者使用跟踪系统。提供商使用将 通过可用于远程患者监控的计费代码进行鼓励。这个项目有三个具体的 目标。目标1是开发一种对没有生物医学背景的个人更容易获得的PGx报告。 专业的PGx检测报告将使用AHRQ健康素养普遍预防措施进行调整 工具包，之后将进行用户理解研究，以评估对报告的理解 非专业人士。目标2是将结果跟踪量表集成到患者门户中，以支持自愿跟踪 患者结果的纵向和持续与医疗保健提供者的共同决策。为了达到这个目的， 诊断专用心理测量量表将与患者一起集成到患者平台中 提醒系统将每两周向患者发送短信/电子邮件提醒，并提供心理测量学链接 量表，以及指定社区成员的提醒系统，以进一步鼓励患者 订婚。还将开发一个警报系统，以通知患者和指定的社区成员 在两次评估之间，分数变化了30%，促使患者与他们的医疗保健提供者交谈。用户 将执行验收测试(UAT)，以验证系统是否按预期运行。目标3是发展 应用程序编程接口(API)，用于将患者的纵向心理测量评分直接报告给 医疗保健提供商门户，促进患者与提供商的沟通和持续的PGx指导用药 选择。基于患者自我报告结果的提供者警报系统，包括自杀迹象， 也将开发，紧随其后的是UAT。成功的项目完成将第一次结合纵向 在精神健康领域，为患者和提供者提供患者结果跟踪和PGx指导。

ABSTRACT Selection of medication for mental illness is generally through trial-and-error, with high rates of adverse reactions and sub-optimal efficacy. Pharmacogenetic (PGx) data is thus of particular benefit to facilitate selection of safe and effective medications and is cost effective, decreases resource utilization, and improves patient engagement, with the potential to overcome medication non-adherence. Nevertheless, in the field of psychiatry, patients' familiarity with PGx remains low, demonstrating the need for improved patient-facing PGx materials. The objective of this project is to enhance sustained patient engagement with their genomic information by: a) increasing patient understanding of PGx results by developing a consumer-focused patient report; and b) facilitating patient-provider communication and shared decision making using PGx-guided medication selection on an ongoing basis by increasing patient self-reporting of psychiatric symptoms using regularly administered psychometric scales that are communicated to healthcare providers in real time. This ongoing self-reporting will serve as the entry point to discussions regarding changes to medication regimens, which will be explained to patients using the consumer-focused PGx report. Ongoing and consistent patient-provider communication is known to reinforce patient engagement, further encouraging patient use of the tracking system. Provider use will be encouraged through the billing codes available for remote patient monitoring. This project has three Specific Aims. Aim 1 is to develop a PGx report that is more accessible to individuals without a biomedical background. The Professional PGx assay report will be adapted using the AHRQ Health Literacy Universal Precautions Toolkit, following which a user comprehension study will be conducted to assess understanding of the report by lay individuals. Aim 2 is to integrate outcome tracking scales within the patient portal to support voluntary tracking of patient outcomes longitudinally and ongoing shared decision making with healthcare providers. For this aim, diagnosis-specific psychometric scales will be integrated into the patient platform, together with a patient reminder system that will send text/email reminders to patients every 2 weeks with a link to the psychometric scales, as well as a reminder system for a designated community member to further encourage patient engagement. An alert system will also be developed to notify patients and designated community members if scores change by >30% between evaluations, prompting the patient to speak to their healthcare provider. User acceptance testing (UAT) will be performed to verify that the systems operate as intended. Aim 3 is to develop an application programming interface (API) to report patients’ longitudinal psychometric scoring directly to the healthcare provider portal to facilitate patient-provider communication and ongoing PGx-guided medication choice. A provider alert system based on patients’ self-reported outcomes, including indications of suicidality, will also be developed, followed by UAT. Successful project completion will, for the first time, combine longitudinal patient outcome tracking and PGx guidance, for both patients and providers, in the mental health field.