Cnudde Peter, Rolfson Ola, Nemes Szilard, Kärrholm Johan, Rehnberg Clas, Rogmark Cecilia, Timperley John, Garellick Göran
Swedish Hip Arthroplasty Register, Centre of Registers Västra Götaland, Medicinargatan 18G, SE 413 45, Gothenburg, Sweden.
Department of Orthopaedics, Institute of Clinical Sciences, Sahlgrenska Academy, University of Gothenburg, Gothenburg, SE 413 45, Sweden.
BMC Musculoskelet Disord. 2016 Oct 4;17(1):414. doi: 10.1186/s12891-016-1262-x.
Sweden offers a unique opportunity to researchers to construct comprehensive databases that encompass a wide variety of healthcare related data. Statistics Sweden and the National Board of Health and Welfare collect individual level data for all Swedish residents that ranges from medical diagnoses to socioeconomic information. In addition to the information collected by governmental agencies the medical profession has initiated nationwide Quality Registers that collect data on specific diagnoses and interventions. The Quality Registers analyze activity within healthcare institutions, with the aims of improving clinical care and fostering clinical research.
The Swedish Hip Arthroplasty Register (SHAR) has been collecting data since 1979. Joint replacement in general and hip replacement in particular is considered a success story with low mortality and complication rate. It is credited to the pioneering work of the SHAR that the revision rate following hip replacement surgery in Sweden is amongst the lowest in the world. This has been accomplished by the diligent follow-up of patients with feedback of outcomes to the providers of the healthcare along with post market surveillance of individual implant performance. During its existence SHAR has experienced a constant organic growth. One major development was the introduction of the Patient Reported Outcome Measures program, giving a voice to the patients in healthcare performance evaluation. The next aim for SHAR is to integrate patients' wishes and expectations with the surgeons' expertise in the form of a Shared Decision-Making (SDM) instrument. The first step in building such an instrument is to assemble the necessary data. This involves linking the SHARs database with the two aforementioned governmental agencies. The linkage is done by the 10-digit personal identity number assigned at birth (or immigration) for every Swedish resident. The anonymized data is stored on encrypted serves and can only be accessed after double identification.
This data will serve as starting point for several research projects and clinical improvement work.
瑞典为研究人员提供了一个独特的机会，可构建涵盖各种医疗保健相关数据的综合数据库。瑞典统计局和国家卫生与福利委员会收集所有瑞典居民的个人层面数据，范围从医学诊断到社会经济信息。除了政府机构收集的信息外，医疗行业还启动了全国性的质量登记册，收集特定诊断和干预措施的数据。质量登记册分析医疗机构内的活动，旨在改善临床护理并促进临床研究。
瑞典髋关节置换登记处（SHAR）自1979年以来一直在收集数据。一般而言，关节置换尤其是髋关节置换被视为一个成功案例，死亡率和并发症率较低。瑞典髋关节置换手术后的翻修率在世界上处于最低水平，这归功于SHAR的开创性工作。这是通过对患者进行认真随访，并将结果反馈给医疗保健提供者，以及对单个植入物性能进行上市后监测来实现的。在其存在期间，SHAR经历了持续的有机增长。一个主要的发展是引入了患者报告结果测量计划，让患者在医疗保健绩效评估中有了发言权。SHAR的下一个目标是以共享决策（SDM）工具的形式将患者的愿望和期望与外科医生的专业知识相结合。构建这样一个工具的第一步是收集必要的数据。这涉及将SHAR的数据库与上述两个政府机构相链接。这种链接是通过为每个瑞典居民在出生（或移民）时分配的10位个人身份号码来完成的。匿名数据存储在加密服务器上，只有经过双重身份验证后才能访问。
这些数据将作为多个研究项目和临床改进工作的起点。
