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Health from Data takes a look at the past and the future

Health from Data blog was founded in 2021. It’s the third year and this is the sixteenth release in the blog series. The past year 2022 was active and full of interesting topics in the RWE field.

Terveyttä datasta ottaa katsauksen menneeseen ja tulevaan | Health from Data takes a look at the past and the future

The Health from Data blog was founded in 2021. It’s the third year and this is the sixteenth release in the blog series. The past year 2022 was active and full of interesting topics in the field of RWE.

Last year, one of the key topics of the blog series – and the field of RWE as a whole – was virtual control arms. You can read about them in the previous blogs registry data to support clinical trials and virtual control arms provide more data for decision making. Guest writers were the most active writers in the past year. They blogged not only on virtual control arms, but also on unstructured data and machine learning and the utilisation of register data in patient safety.

In the beginning of Health from Data blog, I took a look at the history of RWE, and noted that field of RWE research was relatively new. The first RWE study was published in 2004. The development of technology and electronic registries enabled the development steps in the field of RWE. Since then, RWE has grown and developed rapidly.

Field of RWE grows annually

The growth of a discipline can be measured in many ways. One usable metric is the number of published studies in the medical field.

“Most of the scientific publications in the field have been published over the past few years, which makes it particularly fascinating to look at the growth and development of the RWE field.”

Since 2019, the number of RWE publications listed in the PubMed database has increased by 300 every year (retrieved from PubMed with the words “real world evidence”). The number exceeded a thousand in 2021, with an increase by a quarter compared to the previous year.

Readers of my blog guessed that the number of RWE studies published last year (2022) would be between 1,500 and 1,999. Some voters even believed that the 2,000-publication mark would be exceeded. To date, nearly 1,600 RWE publications have been recorded in the PubMed database, so the field continues to grow.

The number of studies initiated each year can also be taken as a measure of growth in the RWE field. Estimating the number of initiated studies is, however, challenging as practices vary from country to country. Estimation of the number of initiated studies even in Finland alone is challenging due to the large number of operators.

The Finnish governmental data operator Findata authorises a large part of the RWE studies in Finland, thus also collecting data on granted permits. In addition, some data controllers authorise their own data.

I calculated that 500 studies utilizing Finnish register data are started each year. This is based on the number of positive data permit decisions made by Findata (nearly 200 per year) and the number of data disclosures by Auria Clinical Informatics (approximately 300 data disclosures per year). Due to the fragmentation of data operators, a study may be included twice in the number I have calculated, but it also lacks several studies licensed by one controller. Thus, the amount I have calculated is a moderate estimate of the number of RWE-studies initiated annually in Finland.

Looking at the number of studies initiated and published does not give an exact number for annually initiated RWE projects, as several scientific publications may be produced from one study. Thus, the RWE field continues to grow, but measuring the growth is challenging.

Future prospects

The popularity of RWD continues – and no wonder – after all, RWE can be used for many purposes. The number of RWE studies published worldwide has increased annually by 20-25%.

The number of RWE studies started in Finland has remained rather constant in the 2020s. Findata, faced a flood of data permit applications during its first year of operation. At the end of last year, Findata’s data permit process was accelerated, which further increases the value of the Finnish RWE field.

RWD has enormous potentials – and it does not run out as new data is constantly generated. Follow-up data generated of recently introduced drugs can be analyzed after years. In addition, data selection may grow with new data sources or variables.

In Finland, the organization of healthcare and social welfare was reformed to wellbeing services counties in the beginning of 2023. One of the national goals along the reformation is to increase the importance of data and research. It will be interesting to see how the integration of data in the wellbeing services counties affects the possibilities of RWE studies.

The above mentioned are just examples of why I’ve started consuming RWD with special intensity and joy in 2023.