The topic of digital health data and its use is currently once again in the focus of public discussion, especially strengthened by the draft bill of the Health Data Usage Act (GDNG, see infobox). The GDNG is intended to create the basis for an improved data infrastructure and expand data use in healthcare. In the process, the course is to be set today for the European Health Data Space (EHDS), which is to enable even more intensive cross-national data use from 2025.
The implementation of the new laws and the increasing use of digital tools will massively change the availability of data and the emerging infrastructure – an environment to which healthcare players must adapt at an early stage in order to make the best possible use of its potential. Predominantly, they can take on the role of data provider or data user.
Data providers are companies that already collect health data today and could potentially make it available to other players. In addition to health insurers – whose data is already frequently usable today – this group can include, for example, hospitals, medtech companies, startups or even health IT companies. Data providers are faced with the following questions:
Do I create added value for another actor with the data my company generates? What could my data offer look like?
Data users, on the other hand, are companies that currently have an unmet need for data, for example for their research. In Germany, this often concerns pharmaceutical and software companies (e.g., for AI development). Data users are often faced with the question: Which data could my company already use today? Which data sources complement each other and meet my needs?
The challenges – data providers and data users do not find each other
Currently, we see – also in our Flying Health ecosystem – that the use of health data, apart from technical hurdles, often fails because data user and data provider do not get together. There are four main reasons for this that need to be solved:
- Both parties lack an overview of the current and future health data landscape: the increasing number of players, initiatives and databases in the health sector makes it difficult for both data users and data providers to find their way around. Many data users badly lack knowledge of what new, exciting data exists and, more importantly, will exist in the future. As a result, both important strategic questions are not asked and companies remain stuck in old structures. But data providers also need to have a very good overview of the market and understand who their potential partners have been working with so far – this is the only way to make a good case for why their own data offering adds value. So it’s critical that data providers and data users understand the healthcare data landscape in order to collaborate effectively and recognize mutual value.
- The solution-oriented data culture is not pronounced and there is a lot of uncertainty and need for clarification: With regard to health data in particular, there is a lack of a distinct, solution-oriented data culture – in many organizations, generic privacy and security concerns are paramount. Over the past 10 years, fear of digital data has been stoked and the potential ignored. There is a lack of curiosity about new data and enthusiasm for the opportunities that digitization brings to healthcare. Both data users and data providers are often unsure about how health data can be used and what opportunities exist for collaborations. Comprehensive, solution-oriented education about data protection, data security and possible uses is essential to increase trust in data use – both internally and externally.
- There is great concern about technological and regulatory hurdles in the use of data: Many players in the healthcare sector are currently still struggling with the lack of digitization of their processes, uniform interfaces and standards. At the same time, with the GDNG, the Research Data Act or the Register Act, new regulatory requirements are constantly emerging that need to be known and taken into account. It can be observed that these are often factors that paralyze data cooperation or nip it in the bud. It is therefore important to build up good knowledge and find suitable partners. To ensure trust, security and the technical requirements, intermediaries such as data trustees and data platforms could play an important role. These can play an important role as data enablers.
- There is a lack of mutual understanding of needs: Often, data use fails because data providers do not sufficiently understand the needs of data users. At the same time, they often do not have a specific search mandate to fulfill either. It is important for data providers to identify use cases and gaps in the data landscape in advance in order to address targeted research and supply needs with their offerings. It is essential to understand your partners and their needs. But data users also need to do their homework internally and be clear about the questions they want to answer with digital health data – this is where point 1 helps: knowing what the digital health data landscape has to offer. After all, modern data sources open up new potentials, and so some questions can finally be addressed that were previously disproportionately costly to answer.
Flying Health is continuing to work closely with both parties to address these issues and make data useful. We will provide more information on both parties in our upcoming blog articles.