A vacina contra HPV e o câncer de colo de útero: desafios para a sua incorporação em sistemas de saúde

Abstract

Eugene Nelson and colleagues call for registries of care data to be transformed into patient centred interactive learning systems Large scale collection and analysis of data on patients' experiences and outcomes have become staples of successful health systems worldwide. The systems go by various names—including registries, quality registries, clinical databases, clinical audits, and quality improvement programmes1 2— but all collect standardised information on patients' diagnoses, care processes, and outcomes, enabling systematic comparison and analysis across multiple sites. Hundreds of what we will term, for simplicity, “registries,” now exist around the world. The United Kingdom is home to over 50 clinical audit programmes,3 the United States has over 110 federally qualified registries certified to report quality metrics,4 and Sweden, perhaps the registry epicentre, has over 100, covering conditions from birth to frail old age.5 These registries have had far reaching effects. They facilitate public reporting, retrospective and prospective research, professional development, and service improvement. They reveal variations in practices, processes, and outcomes, and identify targets for improvement. In the UK, they have been associated with many notable successes, including improvements in management of cardiovascular disease and stroke,6 7 cancer,8 and joint replacement.9 Nevertheless, few registries have realised their full potential. Feedback of data to participating clinical centres often lags well behind actual care, making data obsolete and less useful. Many registries have not caught up with the digital era, continuing to rely on manual data entry (and often double entry), which is tedious, expensive, and prone to error. The data may be restricted to a small number of uses, rather than being used for multiple purposes. Perhaps most problematic of all is that many registries have limited patient involvement in their design, oversight, or operations.10 Patients may not be asked to identify …