The Quality Registries of Medical Care Must be Used in a Better Way

Hanna Gyllensten Katarina Steen Carlsson Martin Neovius Joakim Ramsberg

The access to decision data on the effects of drugs and other kinds of care is insufficient in medical care. This also applies to Sweden – despite the fact that we are proud of our quality registries. They need to be developed, made more accessible for analyses and used to a larger extent for follow-ups of the health effects of various treatments. Then, we can get a better, more secure and more cost efficient medical care. This is the conclusion of two new research reports that have been published within the framework of the SNS research programme The Value of New Drugs.

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For a new drug to be introduced, careful studies of trial persons are required. But once the drug is used, there is often a lack of a broad, systematic follow up of the effects on patients. This means that the existing knowledge on which decisions about a continued use of the drugs based runs the risk of being insufficient in medical care. At the same time, we know that the costs for an incorrect use of drugs are large. For one month, it is estimated that about every fifth Swede has been affected by some kind of drug-related illness in the form of side-effects and negative or insufficient effects of incorrect medication.

Two new research reports, produced at the request of SNS, provide data for more suggestions about how Sweden can use patient registers to improve the use of drugs:

Require an evaluation of recently introduced drugs. The Dental and Pharmaceutical Benefits Agency should require that there is a plan for the evaluation of the new drugs that are to be introduced. It must appear how data are to be registered and analysed.
Use the quality registries to follow up the effects of treatments. Make the existing registries more functional and available for analysis, even for other people than those who are responsible for each registry.
Follow the effects over time. Make anonymous long-term follow-ups based on individual data from registries to the extent that case records are not available.
Measure the costs for drug-related illness. There is no collected analysis of the costs for society of an illness that has been caused by drugs. An analysis should cover all costs, besides direct costs for medical care also production loss due to illness, costs for care and health losses for the affected individual.
Use the possibilities to coordinate the registries. Coordinate quality registries, national health data registries and population registries with the aim of measuring and following-up both the intended effects and side-effects and effects of the incorrect use of drugs.
Invest more in the research on treatment. The state and the county councils should give further financial support to research on clinical treatment including register-based follow-up studies.
Cooperate at the international level. There is a large potential for extended international cooperation as concerns comparisons of the effects of different kind of drugs.

-Both in Sweden and at the international level, there is an incorrect knowledge in medical care about what treatments give the best effect. By using quality registries enriched with information from other register sources, many knowledge gaps can be closed, in particular if the use of randomization inside the quality registries is expanded. This would provide us with possibilities for a better, more secure and more cost efficient medical care, according to Martin Neovius, Associate Professor (Docent) of Epidemiology at Karolinska Institutet and co-author of one of the studies.

The authors of the reports are

HANNA GYLLENSTEN, Nordic School of Public Health NHV
MARTIN NEOVIUS, Karolinska Institutet
JOAKIM RAMSBERG, Karolinska Institutet

On September 10, SNS organized a round table discussion about the use of registries in medical care.