Combination of app-based data collection linked to rich data-sets provides a unique (largely untapped) gold mine
16 Mar 2019

Many have heard that the Nordic Countries have good opportunities for real world evidence studies. From the activity we can observe, it appears that the opportunity is not fully understood by industry.

There is a large untapped potential to answer many important questions. After meeting with Apple where I learnt more about the toolkits they have available for research I want to focus on the specific topic when a study is carried out where either the doctor and/or the patient provides data through an app and how this can be combined with ‘all’ other health-care data sets through the systems of personal identity numbers.

Data linkage with personal identity numbers

The ability to use the personal identity numbers can in most cases be used as a unique identifier to link different data-sets together such as:

  • National data-sets based on the data in the EHR’s, cancer registries, drug registries etc
  • Disease / intervention specific registries (This is many times where the really valuable rich data is…)
  • Socio economic registries

If you create a study, which is granted ethical approval, where the personal identity is collected in the app and you have consent to link the data, you have the key to link the data from the patient with a gold mine.

National registries vs disease / intervention specific registries

The national registries that are available in the Nordics are of high quality, but as with similar data sets in Europe they have a quite limited depth in the available variables. However, only the ability to link the data from the patient / doctor in a study with this additional data can be very valuable to understand different questions of interest.

The most important value will many times come from the disease /  intervention registries which has a quality level that has a level of quality that may be difficult to comprehend if you are not aware. The situation is somewhat different in the Nordic countries in how broadly this type of registries are used. Maybe a biased perspective, but I would rank the countries this way in terms of disease / intervention specific registries:

  1. Sweden (we do have the most registries..)
  2. Denmark
  3. Norway
  4. Finland

These data sets m any times have the same quality of the data as what is collected in clinical trials. Some have study monitors evaluating the quality, others have validation studies carried out. There are registries that have 99% + coverage of all the intervention within the specific disease. Some of them have several hundred specific variables for the disease / intervention in question.

As for all clinical research the study question has to be relevant and have the appropriate ethical approval to be carried out.

If you have a research question, where it would be feasible to collect data in an app solution and you want to connect this to a gold-mine, please do not hesitate to contact us.