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Ageing Nation’s Heritage to Benefit Registry-Based Research (Guest blog)

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Five million Finns represent one of the most rapidly ageing populations in Europe. An ageing population translates into increasing future healthcare expenses.

The focus of public health problems is moving from cardiovascular diseases and mental health problems to cancers and neurological diseases. We know that the change is ongoing, but new information on its impact is still needed.

Age is a risk factor in many medical conditions. Stroke is one of them. According to estimates by the Finnish Brain Association (Suomen Aivoliitto), each stroke costs society at least 50,000 euros during the patient’s remaining life. If the stroke leads to permanent institutional care, the costs multiply. It is certainly worthwhile investing in good care – and especially in prevention – and this is exactly what Finland has been doing for the past couple of decades. Although the population is ageing, the number of cerebral infarcts has somewhat receded.

Information for healthcare management

In order to manage overall healthcare expenditure, we need information on what gives rise to these expenses. In Finland, this information is collected in various registries. For decades, patient data has been stored in different digital registries. Moreover, we have several national-level registries on medicines reimbursement, disability pensions and cancer diagnoses, to quote just a few. If no research is done, this mass of information remains unutilised – and no society can afford to do that.

Information to serve research and more efficient treatments

Research outcomes have led to more efficient treatment for stroke patients. The objective is to administer the thrombolytic therapy within a few hours of the stroke and to start emergency treatment, whenever possible, in just a few minutes. It would be preferable to be able to prevent strokes through life choices or good medication. Owing to the registry-based data, we are aware of the impact of these new treatment practices on the overall expenses for the disease.

So far, the use of the Finnish registry-based data has been far too limited. Today, all parties, the Ministry of Social Affairs and Health included, recognise that the registries constitute huge pools of information, which are there to collate data for more extensive uses. In fact, we consider them to be indispensable for the correct allocation of social welfare and healthcare resources. Increasingly, society and people require research-based information on the impact of various measures. Information is harnessed to allow more effective management.

Registry-based information could also promote patient recruitment for clinical trials and facilitate biobank research. With the help of samples and patient data, research can be focused with increasing detail. Today – in most cases – it is not enough to search for information in just a single registry. To have a more extensive overall view, it is important to combine the information from various registries.

Efficient medication may seem expensive if evaluated only as an individual cost item. However, if the pharmacotherapy costs are weighed as a part of the overall therapy of the patient, the view is suddenly quite different. From society’s point of view, good medication is repaid when people’s working and functional capacity are maintained. Prevention of cerebrovascular occlusions pays off, even with medication, if it helps to avoid inpatient care for the rest of the individual’s life. It is easy to put a price tag on the direct costs but far more difficult to quantify a fair price for quality of life.

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