Patient-reported outcomes in Alberta: rationale, scope, and design of a database initiative
Patient-reported outcomes in Alberta: rationale, scope, and design of a database initiative
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DOI：
10.3747/co.26.4919
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发表时间：
2019-08-01
期刊：
影响因子：
2.6
通讯作者：
Cheung, W. Y.
中科院分区：
文献类型：
--
作者：
Cuthbert, C. A.;Watson, L.;Cheung, W. Y.
背景收集患者报告结果(PRO)是许多癌症组织的标准护理。在艾伯塔省，自2012年以来，专业人员已被纳入常规临床实践。这种专业人士的纵向收集提供了丰富的数据和独特的研究机会，以改善癌症护理。这项PRO DATA计划的目标是建立一个强大的信息库，用于持续的临床护理和专注于PRO的研究。在这篇文章中，我们描述了这一倡议的基本原理、范围和设计。该倡议的实施包括来自艾伯塔省的PROS和其他行政卫生数据。从各种省级管理来源检索健康数据将创建一个关于PRO、健康结果、癌症数据、其他健康状况和人口统计信息的平台。这项倡议的目的是利用这些数据为医疗保健的最佳实践提供信息；进行卫生服务研究，特别是临床流行病学研究；并评估各种与PRO相关的结果。讨论由于这是我们首次将常规收集的PRO与其他管理卫生数据相结合，因此将创建一个独特而强大的数据库。整合各种类型数据的能力将提供一个全面的机制来评估各种成果。由于艾伯塔省的癌症护理由单一的医疗保健系统管理，数据链接将包括人口健康和心理社会癌症数据。我们预计，与这一倡议相关的研究最终将有助于为更多以患者为中心的护理提供信息。
Background The collection of patient reported outcomes (PROS) is a standard of care in many cancer organizations. In Alberta, PROS have been integrated into routine clinical practice since 2012. This longitudinal collection of PROS provides a wealth of data and a unique research opportunity to improve cancer care. The goal of this PRO data initiative is to establish a robust repository of information for ongoing clinical care and research focused on PROS. In this paper, we describe the rationale, scope, and design of this initiative.Implementation The initiative consists of PROS and other administrative health data from the province of Alberta. Retrieval of health data from a variety of provincially governed sources will create a platform of information on PROS, health outcomes, cancer data, other health conditions, and demographics. The aims of the initiative are to use the data to inform best practices at the point of care; to conduct health services research, particularly clinical epidemiology studies; and to evaluate a variety of PRO-related outcomes.Discussion Because this effort represents our first to integrate routinely collected PROS with other administrative health data, a unique and robust data repository will be created. The ability to integrate various types of data will provide a comprehensive mechanism to evaluate a variety of outcomes. Because cancer care in Alberta is governed by a single health care system, the data linkages will include population health and psychosocial cancer data. We anticipate that research related to this initiative will ultimately help to inform more patient-centred care.