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The Value of Patient Registries

June 25, 2014
The Swedish healthcare system has an acknowledged expertise in collating and managing patient samples and data. Indeed, the Swedish biobank infrastructure stimulated much of the initial excitement about biomarker discovery and the role biomarkers can play in personalized healthcare development.

At this years’ Convention, a session chaired by Steven Burrill will focus on another major asset – Swedish patient registries. The event will explore the role that the registries play in improving care and delivering value-based healthcare in Sweden and examine how Swedish expertise could be applied in the US and elsewhere.

The concept of value-based healthcare, whereby actual health outcomes are measured relative to costs, has attracted the interest of healthcare policy makers since the term was coined by Harvard’s Michael Porter and Elizabeth Teisberg in their 2006 book, “Redefining Health Care”. Porter believes that improving value is the only real solution to reforming health care; the alternatives focus on cost cutting per se, cost shifting to patients, restricting services, or reducing provider compensation.

Biopharma companies need to keep a close watch on this development, for several reasons. First, a shift to value-based models will change the entire healthcare provision landscape, especially payment models. Biopharma companies need to consider alliances with integrated healthcare providers. Second, the quality registries play an important role in the introduction of new drugs by documenting early treatment patterns in the everyday care of patients. Third, incorporating patient registries in the regular clinical documentation phase can potentially accelerate approval. And finally, major savings can be achieved, through more efficient patient recruitment to regular clinical trials and by complementing them with prospective registry-based randomized clinical trials.

The ability to systematically and securely collect sufficient data to measure patient outcomes effectively is central to delivering value-based healthcare. This is where Swedish patient registries have demonstrated what can be achieved. For over 40 years patient data has been collected longitudinally in a structured manner. This includes general, population-level information such as cause of death and in-patient treatments and, increasingly, disease/treatment-specific metrics, for example for cardiovascular disease, rheumatoid arthrisits and cancer. All of the registries have been maintained to extremely high quality standards.

By sharing outcomes data openly from these registries, Swedish healthcare providers have achieved a continuous cycle of improvement by identifying best practice and changing treatment routines. One examples is the withdrawal of a certain hip replacement well in advance of the US, and there are numerous other diagnostic and therapeutic examples.

During the session, Burrill will be joined by three leading Swedish experts – Stefan Larsson, Tobias Sjoblom and Sofia Ernestam. They will describe the patient registries system in more detail and explain how all stakeholders – biopharmas, healthcare policy experts and integrated healthcare providers – can draw on Swedish expertise to accelerate their own value-based healthcare initiatives.