Learning how to improve healthcare delivery: theSwedishQualityRegisters

The large number of therapies and diagnostic procedures that are constantly introduced in clinical practice requires a system to generate valid and timely evidence on their benefits and risks. Without a proper scientific assessment of the benefit risk of clinical interventions, clinical practice may be misguided and limited resources may be squandered. Diagnostic tools may be used haphazardly rather than in a logical sequence that optimizes sensitivity, specificity and cost-effectiveness. New surgical procedures – such as radical prostatectomy for treatment of early prostate cancer – may be used on hundreds of thousands of patients in the absence of clear evidence of benefit 1. Generic drugs may be underutilized at the expense of more costly but equally safe and effective brand name drugs 2. The increasing number of people for whom these technologies become available, together with the increasing global burden of noncommunicable diseases – stroke, diabetes, heart disease, cancer, etc. 3 – makes the need to compare their effectiveness and safety even more urgent. The term ‘comparative effectiveness research’ was coined to encompass all clinical and epidemiologic research activities that, like evidence-based medicine, seek to provide reliable evidence on the benefits and risks of health interventions 4. The goal is to make healthcare systems more rational by providing the best care whilst reducing the wasting of resources. Ideally, healthcare systems would be designed in such a way that the data generated during routine clinical practice could be utilized to learn about the long-term benefits and risks of clinical interventions in the general population, including groups traditionally excluded from randomized trials like pregnant women, children and the elderly. Whilst an attractive concept, ‘learning healthcare systems’ are difficult to implement in practice. Common problems are the lack of mechanisms to track individual patients across different healthcare providers and the lack of procedures to ensure the completeness and validity of data collection. The Swedish Quality Registers, admirably described by Emilsson et al. 5 in this issue of the Journal, are a key contribution to a learning healthcare system. As their name implies, these registers were established to improve the quality of health care in Sweden. Their original goal was to ‘examine and improve the delivery of health care’, for example, by monitoring adherence to guidelines and comparing performance across hospitals, levels of care and administrative units. Today, they are formidable resources for comparative effectiveness research, not the least because their data can be linked with multiple nation-wide registers and health databases, which allows virtually complete follow-up of hospitalizations, surgical procedures, drug prescriptions, cancer incidence, immigration and cause of death. In addition, this information can be complemented with the abstraction of data from hospital records and the retrieval of pathological specimens. The Quality Registers take advantage of Sweden's publicly funded healthcare system, national registration numbers (an individually unique identifier), enthusiastic practitioners and supportive citizens 6. Emulating the Swedish registers, or in fact any large scale, population-based research activities, in countries without these conditions may be challenging. However, regardless of the feasibility of establishing similar registries abroad, there remains the question of how to maximize the impact of Swedish Quality Registers. Notwithstanding several key publications that have emanated from them, it seems to us that the Quality Registries are a largely untapped resource. We now offer some suggestions to broaden and deepen the use of Swedish Quality Registers. In summary, the Swedish Quality Registers can become a global resource to improve clinical care and a model for other learning healthcare systems. But, this is unlikely to happen without a strategic plan and willingness to overcome isolationism. Time is ripe for action. No conflict of interest to declare. Karolinska Institutet Distinguished Professor Award to Prof. Hans-Olov Adami, dnr: 2368/10-221 and U.S. National Institutes of Health P01 grant CA134294.