In order to share knowledge and data in a globalized world, and to build trust in the handling of personal information, the world needs a new digital infrastructure. The Origo programme is developing such an infrastructure as a semantic layer on the Internet, in which knowledge itself will be digitalized, replacing the present system of simply digitizing e.g. documents, images or database entries without reference to the knowledge they represent.
This infrastructure will be a common good, run by a neutral governing body on a strictly non-profit basis. There will be a common platform where information from all parts of society is handled in the same way. Control and integrity of personal data will be guaranteed by storing data per individual, enabling the individual to decide who can access his or her information and for what purpose.
“Effective data protection means putting individuals in control of their personal information: by strengthening existing rights and by increasing access to those rights. The idea is simple. It’s your data. You should have a say in how it is used.”
– Communication from the EU-commission on one of the purposes of the General Data Protection Regulation (GDPR)
In today’s society a huge amount of information is being gathered. But that information comes to very limited use. It is locked in myriads of systems so that we cannot access it. Furthermore, different systems describe and store the information in different ways. So, even if we could access it, we would not be able to interpret and combine all this information in meaningful ways.
Data about individuals are used as financial assets by global actors, and individual control of one’s personal data is virtually impossible.
This creates well known problems for all of us as individuals, and for organizations and IT-systems in healthcare, research, industry and public institutions – in fact, for society at large.
If we want to make all data useful, respecting the individual’s integrity and giving him or her control of the data, we need to take a new holistic approach to the creation of a sustainable solution.
The problems outlined in the previous section will be solved by the Origo platform, a new technical infrastructure to organize and distribute knowledge and data. In the section below, we give a more technical description of the platform’s design.
…is a general digitalized language where all knowledge is defined in terms of concepts bound by a common principle. These knowledge definitions provide the framework for every data point stored in the Origo platform. Specifically, data are stored as instances of a defined concept within a coherent structure. These defined concepts are either phenomena (concrete and abstract), events, or executable rules (processes) all linked in a multi-hierarchical structure with built-in checks against circular references. Concepts can be named in different languages, including local variants thereof that can be chosen depending on the context.
The details of the conceptual design are further described in Framtidens Fass och Läkemedelslista (2018, in Swedish).
…is the actual computer code, Headroom Library (HR-lib), executing the process instructions described in the defined rules. HR-lib can be run as a stand-alone program, e.g. in a computer or a mobile phone, or on a server accessed via a web browser.
Applications can be built fully integrated in the platform, utilizing the knowledge definitions only. This is a new development paradigm we call semantic computing. Alternatively, normal applications can be built to store their data in the Origo platform through APIs. The platform may also be used by traditional systems for synchronizing data, making them available to people and usable by other applications. Since rules are executed inside HR-lib, it is possible to analyse data in the platform through queries, i.e. without any data being exposed to the investigator or to other databases. The platform thus guarantees privacy by design.
The components of the platform are further described in Knowledge Agency: Report on the Headroom solution (2018).
…is the fact that each HR-lib is linked to all other HR-libs in a network of nodes. Each compiled (executable code) HR-lib node is verified by using blockchain or a similar encryption method. This ensures that all nodes can perform all tasks, and that they will perform them in exactly the same way. The result is distributed trust – not only with regard to the information but also in regard to the execution of the rules (i.e. what is done to the information) giving a near unlimited dynamic.
Concept definitions and data from every node in the entire network can interact with each other. Thus, each HR-lib can make use of data from its own database and from all other nodes. The result is a coherent, complete ecosystem for managing information. The concrete implications of this, in the case of healthcare-related information, are described in Ett nationellt digitalt ekosystem för hälsa, vård och omsorg (2016, in Swedish).
OGB is the non-commercial organisation that will run the technical platform and guarantee its proper use by agreements with individuals and organisations.
The Origo platform will dramatically reduce the complexity currently experienced in the handling of knowledge and data throughout society. System development will be much easier – in very large projects as well as in the design of small local IT-solutions and personal applications. For the first time in history it will be possible to use the vast amounts of information recorded everywhere in society to support us in our professional and private lives and in the creation of new knowledge. The power of artificial intelligence (AI) will increase when it runs on a platform in which data from all domains of knowledge are uniformly structured. It will be possible to check the AI algorithms and their conclusions because all information and actions executed in the Origo platform are always traceable to their origin. This very important feature of the platform will provide tools for better protection against misinformation and “alternative facts”.
In the Origo platform, every piece of data collected – patient files, lab results, x-rays etc – will be stored per individual patient, irrespective of the system used to record or display the information. The process of replacing a system or creating a new solution tailored to local needs will be much simplified because there will be no need for the migration of data between systems. Standardization and uniform use of terminology and concepts will be possible without hampering local needs or restraining research and development. This is because refinements and additions to existing definitions can be made locally while preserving globally the common understanding of the concepts.
In the platform patients will set their own preferences to determine who has the right to access what information and for what purpose. In tailored applications and portals, patients will be able to cooperate and participate in their treatment in completely new ways, providing their own data from personal devices and apps. When authorized by individuals, healthcare workers will have access to all information needed, without the barriers often imposed by healthcare providers and the judiciary.
An introduction is given in this video, Introduction to the Origo platform.
Examples of further benefits to healthcare are provided in some of the reports found in the section More Info below.
The solution we are building today is the result of a very agile multidisciplinary process of concept development, system design, programming, testing and further development. This process is described in an appendix to Framtidens Fass och Läkemedelslista (2018, in Swedish).
The Origo programme has, in various constellations and under different names, been operative since 2009. Some bridging finance has recently been provided by Vinnova, Sweden’s Innovation Agency but we are currently investigating a number of other possibilities for financial support.
The Origo programme includes the ongoing development of the technical platform, based on a detailed system design which has been verified in a prototype setting. The second component of the programme is preparation for the set-up of the Origo Governing Body – a societal non-commercial organization that will take over the platform once it is fully developed.
In 2020, the initiators of the Origo programme founded a company, Digitaliseringskompaniet Sverige AB (Digikomp), in order to be able to represent the programme as a legal entity. Digikomp is co-founder of Centre for data driven health (CDDH) at the Royal institute of Technology (KTH), in collaboration with Region Stockholm, LIF and the Karolinska Institute. The centre, apart from doing research and education in health data, serves as a platform for the Origo programme, to test ideas and create projects around these ideas.
Allan holds a PhD from Stanford University. Among other things he has been the team leader for a major development project based in the Swedish Ministry of Finance as well as for preparing a long-term strategy for healthcare in the Stockholm County Council. He is the CEO of Mapsec, focusing on the public sector and consulting for the World Bank.
Anette is a co-founder of the brand and innovation bureau Heroes and works as a senior change strategist. Heroes supports businesses and organizations to effectively make use of the possibilities of digitalization, to synchronize brand and customer experience and business models, always taking as a starting point the digital context in which every business operates today.
Fredrik is Consultant Anaesthetist at the Karolinska Hospital. He started out as a mathematician and has also studied and taught both Formal Logic and Physics at the Universities of Stockholm and Linköping, before starting his medical studies. At Karolinska, he has been head of the pre-op assessment clinic and of the department of postoperative pain, as well as team leader of several studies and projects with a focus on IT or informatics. He is a national expert and co-author of some Swedish national guidelines in the field of anaesthesia and intensive care.
Gösta has worked as a researcher, practicing physician and head of IT in the health care sector since 1970. He did his PhD at the Karolinska Institute in the field of endocrinology in 1986. He initiated and participated in a number of informatics projects including Samba and Julius. In 2007 he joined Headlong Development AB as a consultant for the development of a novel approach to information management.
Jens studied economics at Uppsala University. From 1991 he worked as a consultant in the development of software for the publishing industry, mostly for Swedish newspapers and news agencies. Jens is one of the founders and the head of development of Headlong Development AB. Since 2006 his work has mostly consisted of design and system development in the area of health care. He is the head architect in the development of the Origo platform.
Robin started his career as a statistical analyst at Riksbanken, the central bank of Sweden. He has since been the driving force in several smaller consulting and systems development firms. Robin is the other architect behind the Origo platform.
Dan is a senior political scientist, investigator and CEO. In 2001 he received the rank of Honorary Professor. He has held several leading positions in Swedish academic and societal institutions, e.g. CEO (1993 – 2006) of The Swedish Foundation for Humanities and Social Sciences, chairman of the board of the Folkuniversitetet and chairman of the board of the Linné university. Since 1996 he has been a member of the Royal Swedish Academy of Engineering Sciences, and since 1999 a member of the Royal Swedish academy of sciences.
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A presentation from e-health event Vitalis, where Fredrik Oberg lists some examples of structural problems in healthcare data and their solution with Origo. He also gives a brief introduction to Centre for Data Driven Health, a multidisciplinary research centre we’re currently setting up together with Stockholm Royal Institute of Technology (KTH).
In this 20 minutes video presentation, originally held at the Vitalis conference 2020, Fredrik Oberg gives a brief introduction to the basic properties of the Origo platform.
In this report from ESO (Expert Group on Public Economics, under the Swedish Ministry of Finance), the legal implications of the Origo platform are analysed in the context of EUs General Data Protection Regulation (GDPR). The report also proposes a framework for complementary legislation to regulate the rights and obligations in relation to information stored in personal accounts. The author is Allan Gustafsson, one of the founders of the Origo programme.
The first of two parallel reports on the Origo platform. In this paper, the Origo platform (mentioned as the Headroom platform in the text) is analysed from an architectural perspective by an independent consulting agency. After publishing the report, the authors have chosen to join the programme.
”Headroom is a solution to describe, store and securely share knowledge in a digital format using a commonly understandable semantic data structure. This data structure allows both humans and computers to interpret it and absorb the knowledge it represents, irrespective of the languages they understand.”
The second of two parallel reports on the Origo platform demonstrating how it can be used for managing data in the healthcare sector. The report focuses on how the Origo concept can be applied to the very complex handling of drug-related information including e-prescriptions, with a patient-focused use case and a fairly detailed account of the semantics. In an appendix, we give a brief account of the 12-year process behind the development of the Origo platform.
In this paper Allan Gustafsson outlines the future implications of an information eco-system such as that suggested by the Origo programme. The report was written before Allan joined the programme.
Initiated by the Stockholm Diabetes Association, this report describes the possibilities enabled by a person-centred handling of healthcare-related information using an Origo type platform. The report, describing a seamless flow of information between individuals, industry, research and academy with individual patients in full control, was written by some of the founders of the Origo programme.
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