SOURCE: The Boston Consulting Group

The Boston Consulting Group

December 08, 2011 11:00 ET

International Study Assesses Disease Registries as Means for Improving Health Care Value

Report by The Boston Consulting Group Finds Registries Improve Health Outcomes While Also Lowering Costs

BOSTON, MA--(Marketwire - Dec 8, 2011) - The U.S. health-care system could improve health outcomes and save billions of dollars if it followed the lead of other countries and established a system of disease registries, according to a new study by The Boston Consulting Group (BCG).

A BCG study of 13 disease registries in 5 countries (Australia, Denmark, Sweden, the U.K., and the U.S.) identified numerous instances where registries have contributed to significant improvements in health outcomes even as they lowered the total health-care costs for a given condition. The results of the study are detailed in a new report titled "Improving Health Care Value: The Case for Disease Registries," which is being released today.

The Case for Disease Registries

Disease registries are health care institutions that track patient outcomes in a population of patients with the same diagnosis (for example, acute coronary disease) or who have undergone a common medical procedure (such as cataract surgery).

"By identifying variations in outcomes within the same population, registries make it possible to benchmark and assess comparative performance at the clinic, regional, national, or even international level," said Stefan Larsson, a BCG senior partner and coauthor of the report. "In-depth analysis of the causes behind variations in performance leads to the identification of best practices. Active dissemination of those best practices and support to enable their adoption can improve outcomes and reduce variations in clinical practice over time."

"What's more, systematic quality improvement of this type can also have the virtuous side effect of lowering total health-care costs for a given condition," said Peter Lawyer, a BCG senior partner and coauthor of the report. "For example, we estimate that if the U.S. had in place a registry for hip-replacement surgery comparable to the one that currently exists in Sweden, the U.S. would avoid some $2 billion of an expected $24 billion in total costs for these surgeries in 2015."

Disease Registries and Health Care Reform

Disease registries are becoming even more important under health care reform as payments for care are linked to effective treatments. For example, the country of Sweden has been an international pacesetter in the establishment of registries. Currently, Sweden has nearly 90 government-funded registries that cover more than 25 percent of total health-care expenditures.

"The data they generate is used actively by an engaged clinical community and has delivered national benefits in the form of improved health outcomes," said Larsson. Sweden has some of the best health-care outcomes in Europe, even though its health-care costs, as a percentage of GDP, are only about 9 percent. By contrast, the U.S., which has the highest per capita costs, spends 17.6 percent of GDP on health care.

Although the U.S. has some highly successful registries (such as the Cystic Fibrosis Patient Registry, run by the Cystic Fibrosis Foundation, which is described in the report), the complexity and fragmentation of the U.S. health-care system is a major obstacle to the widespread use of registries in the United States.

"The fragmented nature of the U.S. health care system has seriously limited the collection and use of national health-outcomes data," said Lawyer, who is presenting the findings of the study today in a keynote address at FDA/CMS Summit in Washington, D.C. "Reporting standards and clinical outcome metrics differ substantially across the system, even within the same speciality. There currently exists no national mechanism to compel providers to report outcomes to disease registries. Nor is there a unique patient identifier in place that would enable research to combine data across different disease states to examine the effect of comorbidities."

The authors argue that key stakeholders will need to champion registries for more widespread and systematic use if they are to take hold. "National medical societies, in particular, have a leadership role to play," said Lawyer, "both in creating uniform standards for data collection and in securing broad support and participation of practicing clinicians."

The federal government can also support registries, he added, "by creating a legislative and regulatory framework that facilitates their establishment and by providing seed funding to get them up and running."

A copy of the report can be downloaded at For additional background on disease registries, see the authors' recent article in Health Affairs, available at

To arrange an interview with one of the authors, please contact Eric Gregoire at +1 617 850 3783 or

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