Precision Medicine Care Coordination in the Veterans Health Administration

背景：精准医疗是一种创新方法，它考虑到个体遗传因素， 差异，为个性化决策提供信息，可以改善诊断，预后，风险评估，治疗 和疾病预防。基因服务，包括基因检测和基因咨询， 到精准医疗遗传服务尚未在许多省得到系统采用， 退伍军人事务部（VA）的设施，因为他们的复杂性，有限的遗传学知识和专业知识， 临床医生和利用的组织障碍。尽管如此，对精准医疗的需求在 VA正在增加，并了解遗传病常见转诊原因的最佳护理安排 咨询对于为退伍军人规划高质量和高价值的精准医疗至关重要。 现有的遗传咨询类型存在很大的差异（例如，癌症，神经或 生殖遗传学），遗传顾问的预期作用（即，诊断、程序或护理 管理）和VA中这些咨询的护理安排（即，护理模式 分娩和VA或非VA护理）。为精准医疗提供不同的护理安排选择， 有益的，但只有当护理安排与患者的需求和偏好相匹配， 转介提供者，并导致安全，有效和高效的护理协调。然而，目前， VHA中精准医疗护理安排的变化取决于可用的当地资源， 作为现场遗传学专业知识或通过远程医疗服务协议提供，而不是护理 安排是灵活的，符合病人和供应商的需求和偏好。 目的：本VA HSR&D IIR提案的目的是评估护理协调的精确性 医疗，包括护理协调方法和活动及其效果， 在VA遗传咨询的常见原因的护理安排。我们将实现以下目标： 目标1.描述VA机构的精准医疗护理协调方法和活动， 到护理安排（即，模式、提供方式和环境），包括： 促进或阻碍转介遗传咨询，转介原因，转介量， 顾问，并使用从公司数据中提取的数据成功完成遗传咨询 仓库目标2.描述护理协调方法和活动对以下患者的影响： 根据护理安排完成遗传咨询，包括：（a）遗传检测的接受和（B） 卫生保健利用的程度（例如，接受程序、成像、治疗） 咨询临床医生目标3。描述情境因素（患者、提供者以及内部和外部环境） 影响精确医疗护理协调方法和活动（目标1）;及其对 已完成遗传咨询的患者（目标2）。目标4。制定精准医疗护理措施 利用专家小组方法，为遗传学转诊的共同原因协调办法和活动。 方法：我们将进行一项回顾性、观察性研究，使用定量和定性方法 方法.我们将利用退伍军人事务部世界一流的电子健康记录来识别患者的记录， 他们被要求进行基因咨询我们将使用自然语言从这些记录中提取数据。 语言处理和手工图表审查（目标1和2）。我们将对关键人物进行定性访谈， 我们将使用专家小组的方法来制定护理协调措施（目标4）。 影响：项目调查结果的综合将指导医疗保健系统各个层面的决策，从 遗传保健服务的个人临床经验，以全系统的政策决定， 劳动力准备、基础设施需求以及精准医疗的最佳护理安排， 我们的目标是确保为退伍军人提供高质量和高价值的精准医疗。

Background: Precision medicine is an innovative approach that takes into account individual genetic differences to inform personalized decisions that can improve diagnosis, prognosis, risk assessment, treatment and disease prevention. Genetic services, including genetic testing and genetic consultation are fundamental to precision medicine. Genetic services have not yet been systematically adopted in many Department of Veterans Affairs (VA) facilities because of their complexity, the limited genetics knowledge and expertise of clinicians, and organizational barriers to utilization. Nonetheless, the demand for precision medicine within the VA is increasing, and understanding optimal care arrangements for common referral reasons for genetic consultation will be crucial to planning for high-quality and high-value precision medicine for our Veterans. There is substantial variability in the type of genetic consultation available (e.g., cancer, neuro- or reproductive genetics), the expected role of the genetic consultant (i.e., diagnostic, procedural or care management) and in the care arrangements for these consultations in the VA (i.e., care model, mode of delivery and VA or non-VA care). Having different options for care arrangements for precision medicine can be beneficial, but only if the care arrangements are matched to the needs and preferences of both patients and the referring providers, and result in safe, effective and efficient care coordination. However, currently the variation in care arrangements for precision medicine in the VHA depends on available local resources, such as genetics expertise on-site or available through a telehealth service agreement, rather than care arrangements that are flexible and congruent with patient and provider needs and preferences. Objectives: The goal of this VA HSR&D IIR proposal is to evaluate care coordination for precision medicine, including the care coordination approaches and activities and their effects according to available care arrangements for common reasons for genetic consultation in the VA. We will conduct the following aims: Aim 1. Describe the precision medicine care coordination approaches and activities at VA facilities according to the care arrangement (i.e., model, mode of delivery, and setting), including: the structures of care that facilitate or hinder referral for genetic consultation, referral reasons, referral volume, expected role of the consultant, and successful completion of genetic consults using data extracted from the Corporate Data Warehouse. Aim 2. Describe the effects of care coordination approaches and activities for patients who have completed a genetic consult according to the care arrangement, including: (a) genetic testing uptake and (b) extent of health care utilization (e.g., uptake of procedures, imaging, treatment) as recommended by the consulting clinician. Aim 3. Characterize the contextual factors (patient, provider, and inner and outer setting) influencing precision medicine care coordination approaches and activities (Aim 1); and their effects for patients who have completed a genetic consult (Aim 2). Aim 4. Develop measures of precision medicine care coordination approaches and activities for common reasons for genetics referral using expert panel methods. Methods: We will conduct a retrospective, observational study using both quantitative and qualitative methods. We will leverage the VA’s world-class electronic health record to identify records from patients for whom a genetic consultation has been requested. We will extract data from these records using natural language processing and manual chart review (Aims 1 and 2). We will conduct qualitative interviews with key informants (Aim 3), and we will use expert panel methods to develop care coordination measures (Aim 4). Impact: Synthesis of the project findings will guide decisions at every level of the healthcare system, from the individual clinical encounter for genetic health care services to system-wide policy decisions regarding workforce preparedness, infrastructure needs, as well as optimal care arrangements for precision medicine, with the goal to ensure high-quality and high-value precision medicine for our Veterans.