Integrating Patient Generated Family Health History from Varied EHR Entry Portals

摘要：本申请涉及广泛的挑战领域（10）：处理卫生保健数据的信息技术，以及具体的挑战主题，10- hg -101：“疾病预防和个性化医疗的新信息技术和资源”。背景：长期建立的智慧，包括家庭健康史的一个关键部分的个人医疗记录，已被新的强调个性化医疗振兴。虽然在过去，家族史被用来了解个人的疾病风险和集中疾病预防工作，但在21世纪的医学中，家族史的重要性将增加，因为将详细的个人遗传信息放入临床环境中至关重要，即共享代码如何在一个人的近亲中发挥作用。这种对家庭健康史的新需求将要求为所有患者提供更全面的家族史数据集，而医疗保健提供者面临的时间限制要求技术驱动的解决方案，即患者执行主要数据输入，然后提供者对这些数据进行细化。目前还不存在解决方案，大多数美国人可以组织他们的家庭健康史，然后将其放入他们的电子健康记录（EHR）。我的家庭健康画像（MFHP）是一种开源的电子家族史收集工具，由卫生局局长开发，提供与电子病历的互操作性，但据我们所知，由于许多电子病历接受这些数据的能力有限，并且在临床实践中系统收集这些数据存在障碍，因此尚未广泛集成。此外，对于那些不懂电脑或没有家庭电脑的人来说，障碍也存在。为了在不同的患者群体中获取患者生成的家族史数据，EHR可能需要为患者提供多种数据输入选项，以考虑偏好、便利性、计算机素养和计算机可用性的差异。本提案旨在开发新的资源，家族史数据输入到电子病历。这些资源将在大型复杂医疗保健系统内的初级保健环境中进行开发、测试和验证。研究计划：拟议的项目将检查三个创新门户网站的覆盖范围、有效性、采用和实施情况，以将患者生成的家族史数据与电子病历进行转移和整合。具体目标1（技术开发）是开发三个门户，用于将患者生成的家族史数据与电子病历集成在一起。这些途径将包括：(1)候诊室的电脑平板电脑，以完成MFHP；(2)安全的互联网门户，以传输患者在家中使用MFHP收集的数据；(3)交互式语音应答（IVR）系统，通过电话收集必要的数据元素。这些模式中的每一种都将与使用当前数据标准的大型卫生服务系统的电子病历接口。这些模式中的每一种都将被设计为与使用当前数据标准的大型卫生服务系统的电子病历接口。具体目标2（内容开发和验证）是通过评估患者偏好、隐私问题、便利性和理解方面的差异，评估采用和实施这三种电子门户的促进因素和障碍。由这三个门户收集的家族史数据的有效性也将由遗传咨询师进行评估。具体目标3（试点随机对照试验）是进行一项四组试点随机对照试验（RCT），以衡量将该家族史数据与患者的电子病历整合的范围和有效性。该试验将检查和比较家族史记录的变化、患者-医生对家族史的讨论、患者和提供者对目标1中描述的每个数据输入门户的满意度，以及对照组。该试验将在布里格姆和妇女初级保健实践研究网络的选定实践中作为试点集群随机对照试验进行。潜在影响：获得准确的家族史数据并将其与个人健康记录相结合的影响是巨大的，随着我们对基因组理解的进步，这种影响将变得越来越重要。该项目最终将有助于更好地理解如何将现有技术与电子病历相结合，以获得准确的家族史，从而在各种环境和不同患者群体中广泛获取和整合准确的家族史数据。从这个项目中获得的技术和经验教训将输出到美国各地的医疗保健机构。在21世纪，家族健康史的重要性将会增加，因为将详细的个人遗传信息放在个人健康的背景下是至关重要的，即共享代码如何在个人及其最亲近的亲属中发挥作用。我们对遗传学理解的这些科学发展将要求为所有患者提供更全面的家族史数据集，而医疗保健提供者的时间限制要求技术驱动的解决方案，将个人对其家族史的了解与医疗保健提供者维护的医疗记录相结合。目前还不存在一种解决方案，使大多数美国人能够组织他们的家庭健康史，然后将其放入他们的电子健康记录（EHR）中。我们建议开发和比较三种不同的方法，利用独立于医疗保健访问的计算机技术，包括电话（交互式语音应答技术）、医生候诊室的平板电脑和家中安全的互联网门户，主动收集患者的家族史信息。这些工具将以美国外科医生的“我的家庭健康画像”为基础，这是一个电子家族史收集工具。家族史数据将被转移并与大型初级保健网络中患者的电子病历整合。该项目将试图证明，使用这些技术，不同的患者可以准确地报告家族史数据，并且可以将这些数据整合起来，根据他们的家族风险来定制个人的医疗保健。

DESCRIPTION (provided by the applicant): Abstract: This application addresses broad Challenge Area (10): Information Technology for Processing Health Care Data, and specific Challenge Topic, 10-HG-101: "New information technology and resources for disease prevention and personalized medicine." Background: The long established wisdom of including family health history as a key part of an individual's medical record has been invigorated by the new emphasis on personalized medicine. While in the past, family health history was used to understand an individual's disease risk and to focus disease prevention efforts, in 21st century medicine, family health history's importance will increase as it will be essential to put detailed personal genetic information into a clinical context, namely the context of how the shared code has played out in a person's closest relatives. This new need for family health history will demand a more comprehensive family history dataset for all patients, and the time limitations faced by healthcare providers demand a technology-driven solution whereby the patient performs primary data entry and the provider then refines these data. Solutions do not currently exist by which most Americans can organize their family health history and then place it into their electronic health record (EHR). My Family Health Portrait (MFHP) is an open source, electronic family history collection tool developed by the Surgeon General that offers interoperability with EHRs, yet to our knowledge has not been widely integrated because of limitations in the capacity of many EHRs to accept these data, and barriers to the systematic collection of these data in clinical practice. Additionally, obstacles exist for those individuals who are not computer literate or do not have access to a home computer. In order to capture patient-generated family history data across diverse patient populations, EHR's may need to offer patients a variety of data entry options which allow for differences in preference, convenience, computer literacy, and computer availability. This proposal seeks to develop new resources for family history data entry into the EHR. These resources will be developed, tested and validated in a primary care setting within of a large complex healthcare system. Research Plan: The proposed project will examine the reach, effectiveness, adoption and implementation of three innovative portals to transfer and integrate patient generated family history data with an EHR. Specific Aim 1 (technical development) is to develop the three portals for entry of patient generated family history data integrated with an EHR. The pathways will include: : (1) computer tablets in waiting rooms to complete the MFHP, (2) a secure internet portal to transfer data collected by patients at home using MFHP, and (3) an interactive voice response (IVR) system to collect the necessary data elements by phone. Each of these modalities will interface with the EHR of a large health delivery system using current data standards. Each of these modalities will be designed to interface with the EHR of a large health delivery system using current data standards using current data standards. Specific Aim 2 (content development and validation) is to evaluate facilitators and barriers to the adoption, and implementation of these three electronic portals by assessing differences in patient preferences, privacy concerns, convenience, and understanding. The validity of the family history data collected by each of these three portals will also be assessed by a genetic counselor. Specific Aim 3 (pilot randomized controlled trial) is to conduct a 4-armed pilot randomized controlled trial (RCT) to measure the reach and effectiveness of integrating this family history data with a patient's EHR. The trial will examine and compare changes in family history documentation, patient-doctor discussion of family history, and patient and provider satisfaction with each data entry portal described in Aim 1, as well as a control arm. The trial will be conducted as a pilot cluster RCT in selected practices within the Brigham and Women's Primary Care Practice-Based Research Network. Potential Impact: The impact of obtaining accurate family history data and integrating this with an individual's health record are substantial, and will be of growing importance as our understanding of the genome advances. This project will ultimately contribute to a better understanding of how available technologies can be integrated with EHR's to obtain accurate family history in ways that allow for widespread acquisition and integration of accurate family history data in a variety of settings and diverse patient populations. The technology and lessons learned from this project will be exportable to healthcare settings throughout the United States. In the 21st century, the importance of family health history will increase as it will be essential to put detailed personal genetic information into the context of an individual's health, namely the context of how the shared code has played out in an individual and his/ her closest relatives. These scientific developments in our understanding of genetics will demand a more comprehensive family history dataset for all patients, and the time limitations on healthcare providers demand a technology-driven solution that integrates an individual's knowledge of their family history with the medical records maintained by their health care providers. A solution does not currently exist by which most Americans can organize their family health history and then place it into their electronic health record (EHR). We propose to develop and compare three different ways of proactively collecting family history information from patients using computer technology independent of a health care visit, including telephone (interactive voice response technology), tablet computers in a physician's waiting room, and a secure internet portal at home. These tools will be based on the US Surgeon General's My Family Health Portrait, an electronic family history collection tool. Family history data will be transferred and integrated with a patient's EHR in a large primary care network. This project will seek to demonstrate that family history data can be accurately reported by diverse patients using these technologies, and that these data can be integrated to tailor an individual's health care based on their familial risk.