National disease registries for advancing health care

Abstract

In Health Affairs on Dec 7, Stefan Larsson and colleagues report the results of a study of registries for diseases and procedures (cataract, heart disease, hip and joint replacement, cancer, and cystic fibrosis). They analysed 13 registries in Australia, Denmark, Sweden, the UK, and the USA. Sweden seems to have been quick to adopt disease registries and has almost 90 that are government supported. The national cataract registry has information on 95·6% of all cataract removals that were undertaken in Sweden since 1992 when the registry was established. Incidence of postoperative endophthalmitis, which is rare, fell from 0·11% in 1998 to 0·02% of all cataract surgery cases in 2009—the lowest reported national average—through the identification of associated risk factors. Sweden has also reduced the incidence of revision hip arthroplasty to 10% since the establishment of the registry in 1979 by identifying best clinical practice as well as implants that have the highest resistance to wear and tear. Swedish surgeons avoided about 7500 revisions and US$140 million in costs during 2000–09. If the USA could reduce its revision burden of hip arthroplasty to 10% by 2015, it would save $2 billion of a predicted total cost of $24 billion. Compared with Sweden, the USA seems to have been slow in establishing disease registries. Nevertheless, US evidence indicates the considerable benefits of registries. For example, the registry for cystic fibrosis is estimated to have averted roughly 5000 patient years of Pseudomonas infection and an associated cost of $230 million (about 2% of total costs for care of cystic fibrosis) from 2000 to 2009. Disease registries play an important part in improving health outcomes. They also reduce the costs of health care. Through the use of such registries, health-care providers can compare, identify, and adopt best practices for patients. The Swedish Government is committed to increasing its annual financial support for disease registries from $10 million to $45 million by 2013. Governments of more countries should follow Sweden's example.