Foreword

Martin Repko

Academia level

Dean of Faculty of Medicine, Masaryk University, Brno, Czech Republic

Modern medicine has made extraordinary progress in recent decades, and especially in recent years. In this respect, excellent medical data and analyses have made an extraordinary contribution to correct decision-making in diagnostic and therapeutic practice. On the one hand, the massive development of the digital world has brought a considerable amount of possible information; on the other hand, it has presented us with the problem of handling and using these data rationally. In particular, advances in openly shared and correct medical data create a rational basis for valid diagnostic and therapeutic reasoning in clinical practice.

The present publication combines excellent statistical-analytical background with case-based elements to demonstrate valid practice in the daily routine of clinical and preclinical biomedical data professionals. The many years of systematic work in this field by Dr. Komenda and his co-authors have resulted in a unique publication that presents first-hand experience in many areas of medicine, the use of biomedical data, and their correct use. These data not only serve to further progress in patient care but also give a new dimension to modern education in biomedical fields. In this publication, the authors draw, among other things, on their own experience with the unique MEFANET project, which has been running for more than 16 years and has significantly contributed to the networking and development of teaching in medical faculties using modern information and communication technologies. I firmly believe that the present publication will substantially enrich all those who wish to deepen the rational practices and proper use of modern technologies and contribute to the use of exact data in medical research and treatment settings.

Vlastimil Válek

Government level

Deputy Prime Minister and Minister of Health
Ministry of Health of the Czech Republic, Prague, Czech Republic
Masaryk University, Faculty of Medicine, Brno, Czech Republic

As the Minister of Health of the Czech Republic and Deputy Prime Minister of the Government of the Czech Republic, I am very pleased to welcome this publication, which demonstrates that the Czech health sector has taken a big step towards using data for diagnostic, clinical and managerial decisions. We have many strategic tasks ahead of us that cannot be accomplished without data; for example, optimising reimbursement in all segments of care, setting up an accurate system for assessing the availability and quality of care or planning the necessary staff capacity and the associated support for training. In all of these areas, we need not only input data, which point to the system’s weaknesses, but also continuous data, which will allow us to evaluate the effect of the measures taken.

The National Health Information System and some of its outputs, which are already available, are an excellent example of how the data and information basis of modern healthcare should be developed. However, I do not intend to overlook the second essential part of the book, i.e. the standardisation and parameterisation of the content of education in clinical and medical disciplines. These outputs and methodological materials are also of considerable international importance, as they prepare our healthcare sector for the inevitable advent of the era of working with open data, i.e. the European Health Data Space (EHDS).

First of all, however, I would like to emphasise in this introduction the essential contribution of this publication to the digitisation of healthcare. Building a modern eHealth system is not just about digitising processes and sharing e-documentation but especially about standardising the content of documentation. Without a standardised collection of diagnostic and clinical data, it is impossible to create meaningful analyses or automate information services, and therefore not even to implement data-driven decision-making.

Therefore, as Minister of Health, I have initiated major steps in the field of standardisation of clinical information systems, which I will summarise in three levels:

1. It is necessary to define interoperability standards for health information systems, and to ensure that these standards are the same as in other parts of the EU. Although the transition period will last until the end of 2026, new installations will already have to take place now in these standards. We refer to this step, in working terms, as Standard A.
2. It must be possible to send requests for examinations and treatments directly to the information systems of healthcare institutions or to transmit them using the citizens’ electronic health cards. I will give an example that is close to my heart as a radiologist. If a doctor issues a request for a CT scan, there are basically three options for getting that request to the relevant department: either the patient brings it in paper form (as is often the case today), or it is sent electronically (similar to how we send CT scan images today), or the patient uploads it to their electronic health card (a special mobile app) and brings it to the relevant department. Electronic appointment scheduling (online calendars) must be a condition of approval for new equipment, including renewals. The electronic transmission of examination findings and final discharge reports (or patient summaries) from healthcare facilities must be linked to apps accessible to every citizen. We refer to the standardisation of examination requests as Standard B.
3. The next necessary step is to standardise the structure of the examination description and discharge report. The degree of standardisation (including the structured description and final report) may vary from facility to facility; it will also depend on the needs of the care segment or specialty. We refer to this step as Standard C.

At this point, I would like to thank the professional societies that have already made significant progress in designing the parameterisation (standardisation) of the content of their medical records, as is evident in many chapters of this publication. For example, very sophisticated proposals can be seen in cancer reports, including the results of screening tests, acute treatment of strokes, treatment of cardiovascular diseases, vaccination records by general practitioners, etc. I firmly believe that this publication is the first step towards further standardisation and digitisation of our healthcare system.

Ladislav Dušek

Expert in data analysis

Director of Institute of Health Information and Statistics of the Czech Republic, Prague, Czech Republic

Data-driven decision-making, particularly assessing the availability and quality of health services, has recently become an integral part of healthcare. This applies to all developed countries worldwide, which, apart from lifestyle diseases, must cope with a noticeably ageing population. However, very comprehensive data are needed to evaluate healthcare [1]. The data basis of any medical evaluation can be defined as a complex set of parameters that describe the input characteristics of the evaluated subjects, their subsequent development and the results obtained. For the data basis to be functional, the data obtained must be relevant to the evaluated process (i.e., they must carry relevant information value) and obtained in a clearly defined format (i.e., they must have usable information value). In clinical practice, both requirements are far from being always met, so reduced data availability becomes a limiting factor for outcome assessment. This is a paradoxical situation, as the cost of data collection and evaluation represents only a small part of the total investment in the treatment itself, yet it can substantially increase the whole system's efficiency. The desire to remedy this situation is the primary motive for the progressive development of the National Health Information System. The case studies published in this book provide clear evidence of its successful implementation.

Studies focusing on reproductive health, cancer care or population-based screening programmes demonstrate the successful utilisation of already available data sources and the subsequent use of the information obtained to standardise the actual data collection. This is crucial, as the most significant limitation to development in this area is the lack of standardisation of routine clinical data collection in healthcare facilities. Electronic and fully parametric patient documentation is not sufficiently optimised in many medical disciplines. This problem is far from limited to the Czech Republic [2,3], and the publication of successful solutions can have a considerable international impact.

The importance of guaranteed data quality increases with the growing volume of multidimensional clinical data sets. The so-called “molecularisation” of contemporary medicine generates data sets where the number of evaluated markers exceeds the number of patients by several orders of magnitude. In parallel, the volume of available data is increasing: according to international literature, the volume of archived clinical data approximately doubles every year. These trends naturally increase the pressure for structured and well-documented storage of data sets. Only standardised and well-described data can serve as the basis for interoperability of information systems. The progressive computerisation of healthcare has been shown to increase the usability of administrative data and reduce burdensome repetitive reporting to different systems. In the Czech Republic, the new Act No. 325/2021 Coll., on the Digitisation of Healthcare [4], is in force. This Act and other regulations have defined different levels of clinical data registration and established procedures for the maintenance and standardisation of electronic medical records.

In addition to their informative content, the case studies presented in this book have a considerable methodological benefit. They illustrate the changing position of evidence-based medicine (EBM) in various clinical applications. Indeed, the term EBM is often simplified to the methodology of interventional prospective clinical trials, which, of course, provide the highest level of confidence in the evidence. However, the spectrum of EBM methodologies is much broader, and there is now a growing need for exact analyses of data from real clinical practice. The so-called real-world evidence (RWE) must not be perceived as a counterpart or even a competitor to EBM: the two approaches are complementary and mutually supportive.

Modern clinical research faces many methodological challenges in segments of medicine where the rapid pace of innovation does not allow for multi-year follow-up of large patient cohorts. There are also complications in areas where the heterogeneity of patient characteristics is so high that a sufficiently large yet homogeneous sample of subjects cannot be obtained. Typical examples of the latter situation include palliative care or systems that monitor the evolution of infectious disease epidemics in real time [5]. High-quality registries can provide an almost unbiased picture of reality in these areas. In particular, protocol-equipped observational studies, based on the platform of clinical registries, should be perceived as an essential research tool that extends – and often corrects – the conclusions of clinical trials but does not replace them [6].

The published case studies are also textbook examples of sharing and making data available for secondary use, which is undoubtedly one of the priority goals of modern health information systems. Sharing and publishing open data is a systematic way to make even large data sets available for further manual or machine processing in a uniform and technically well-defined form. At the beginning of this development, there was a particular drive towards transparency and making data available for management purposes; however, as the digitisation of health services progresses and the volume of centralised data increases, the objectives are expanding substantially. Open data systems determine the development of progressive areas of medical research, such as medical bioinformatics or personalised medicine. In addition, the planned real-time access to data is one of the conditions for the effective digitisation of health services, and de facto forms the basis for the development of entirely new segments of health and social care, telemedicine and systems for remote patient monitoring. I believe that this publication is a step towards further development in this direction.

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3. Dick, R.S., Sheen, R.B.: The Computer-Based Patient Record: An Essential Technology For Health Care, National Academy Press, Washington DC, (1991)
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