Meeting abstracts from the Respiratory Effectiveness Group 2015 Winter Summit – databases and registries around the world: maximizing the yield

Abstract

Current guidelines typically adopt a mechanistic approach to therapeutic management rather than a more individualized approach, guided by analysis of a patient’s problems. The result is that many patients end up on high levels of medications, possibly over-treated, yet uncontrolled. Guidelines currently recommend solutions based on the mean outcomes from registration trials. As such, they are probably applicable to only around 5% of the respiratory population that lies either side of that mean and not the majority of patients, eg, those with comorbidities and lifestyle complications. While the guidelines’ approach puts evidence at the center of their decision making, an evidence-based approach that will benefit the patient must put the patient at the center and adapt the available evidence to their specific needs.Examination of databases goes some way to seeing what happens in real-life and (to some degree) reflects this more patient-centric approach to evaluation of the evidence. By considering the interaction between elements of real-life management (eg, inhaler handling, patient preference, adherence, comorbidities, smoking status) and treatment outcomes, real-life research can help to achieve more tailored, individualized patient management. Inhalers are the most important tools for administration of medication for respiratory disease: a critical success factor of therapy lies in successful administration. By examining different databases from different parts of the world, separately, comparatively or in aggregate, it may also be possible to: identify health care systems that achieve better outcomes (identify the reasons for that differentiation) and to demonstrate real differences in disease prevalence between regions and countries, and possible differences in etiology, which may identify opportunities for developing different approaches to primary prevention (eg, Finnish Allergy Program).If the benefits of treatment to the individual patient are maximized, the aggregate of individual patient optimizations should generate more cost-efficient employment of resources with benefits for the individual and the health care system as a whole. For relatively rare diseases, combining databases from expert centers may well provide clues concerning management optimization (eg, cystic fibrosis and idiopathic lung disease). Such knowledge may also enable us to construct more integrated and streamlined pathways of care, concentrating scarce resources in the centers of excellence and operating (for example) on a hub-and-spoke system – our knowledge of flu depends on such database interactions. Looking to the future, comparative or aggregative database work can save time by constructing databases and introducing common coding and data fields to facilitate information exchange that is valid and reliable, thus avoiding the need to replicate costly work as encountered by the International Primary Care Respiratory Group (IPCRG’s) UNLOCK (Uncovering and Noting Long-term Outcomes in COPD and asthma to enhance Knowledge) database group.