This requires a shift in focus from return on investment to return on data aiming at return on health. A learning health system where we can learn from every single patient starts with the mindset of being aware of the societal value of data and the underlying value of the Hippocratic Oath when contributing to the health and care space.
B. Cooperation with Mission
By applying Ostrom’s principles for self-governance of communities, and common property, data can gain their genuine value when curated within communities with a shared goal (Commons Based Peer Production) or more solid mission driven communities sharing a long-term purpose (data-driven health lab co-operative)26 demonstrating that approach equating data to oil is a false, deceptive assumption. 27 If data would be treated as oil, it becomes a rival product in a highly profitable and under-regulated data economy, without equal health and fair wealth distribution. It won’t automatically match the shared values of our society and specifically the Hippocratic Oath. Similarly to the provisions we have made socially for pure drinking water for all, we will have to orchestrate analogous to how our society takes control when it comes to data and technology in the current technological revolution.
Therefore, a more appropriate definition in healthcare might see data equivalent to blood.29 This would be proper from a moral perspective. However, from a value perspective the definition is incorrect. Because like oil, blood is a finite resource, whereas data are characteristic for their anti-rivalrous property, which means opposed to non-rival goods that are not reduced in case of consumption, data even increase. For example, with the same high quality, context-, device and expert-traceable curated dataset a range of diagnoses can be made. For example, with a combination of this and other curated datasets development of drugs or applications like computational models can be done, while a selected dataset can be used to control quality, finance, and process flow. Most valuable data are curated within a cooperative that’s driven by a shared long-term mission co-creating and representing stakeholders from the different communities with the right to these data: the citizens (or patients) as consent holders, the healthcare professionals and researchers as knowledge contributors, the technology developers as technology orchestrators and the data curators (or Rentmeesters).
C. IT&C Principles Empower Right Mindset
Speijer & Walgemoed are concretizing these principles toward a sustainable health ecosystem. All principles are needed to design its foundation.
1. Data Rentmeesterschap
The requirement for data curation by design in the orchestration of IT&C is first described as data Rentmeesterschap. 30 This encompasses taking care of data, maintaining, and making it accessible to the stakeholders and future generations on behalf of (healthcare) professionals, researchers and citizen including patients.
The first step starts at the moment of data creation: the consultation or knowledge contribution of the healthcare professional and context of the patient. To provide qualitative data, this needs to be open and therefore highly confidential. This cyber-physical moment of interaction determines the quality of data. In order to turn these data into valuable data it needs to be done in agreement with top performing colleagues in the specific domains of expertise; seamlessly and instantly. The second step encompasses archiving data for now and later, as an asset on behalf of the team of the healthcare professional and patient with consent of both. This process is highly confidential between the healthcare professional and patient, with them deciding on the level of transparency for primary and secondary use together.
This is the foundation for a learning health system: the patient with healthcare professional (data driven doctor) as trusted link, both committed to lead with their right to data for health of the individual patient and benefit of society, supported by their trust expert network. Data curation as described above forms the prerequisite for quality, reliability, provenance, and integrity of data. This process is determining the safety and outcome of care, research, and drug and technology development.
2. Dynamic Informed Consent
Dynamic informed consent is an understandable form that describes what happens to the consent holder’s data, its connected technology processors and knowledge contributors using that combination.
3. Data Application Independence and Freedom of Applications
Applications process data. Data is made available independent from the application. In this way data can move freely across applications and can be curated sustainable. Applications now by design can be exchanged by new and better applications, this drives innovation.
Recording of all curated data with their metadata and relations over time provide the context. Because knowledge is added during a specific period in time, time traveling shows what happened when and with new developed insights. One can go back in time to see whether these could give you new insights. It now becomes possible to forecast different scenarios. In addition, artificial intelligence can then drive the support on a bigger level. This forms the technical foundation for the learning health system.
5. Translation Engine with Underlying Living Standards
By connecting the knowledge contributors seamlessly and flexibly, international standards for semantic interoperability like SNOMED, RadLex, NANDA or LOINC supra mentioned can be integrated as underlying living standards facilitating them to curate data increasingly faster and better.
6. Self-Sovereign Identity (“SSI”) with Verifiable Credentials
For seamless, flexible, and trusted connectivity between the patient and healthcare professional in the virtual space credentialing – showing provenance of the data- is required. Technology based on blockchain can help when interacting digitally in a secure and privacy by design way.
7. Personalized User Experience (“UX”)
And since, all applications are processors (they don’t keep or control data), the former ‘one-size fits all’ UX for every single application is now exchanged for a truly per-sonalized virtual space for all processors optimizing over time.
8. Virtual Space
In this virtual environment stepping in and out is easy with freedom of choice as a prerequisite from both sides: the patient and the healthcare professional. Both aiming at the highest level of connectivity and trust. And therefore, health outcomes. Getting insight in the expectations and experiences with each other facilitates this process. Having access to, developing, and selecting the latest and best applications and algorithms. With the ability to specify, improve and kill applications when (potentially) dangerous for safe care delivery or compromising health.