Ronald Cornet

• PhD
• Professor (Full) at Amsterdam UMC

Faced with heterogeneity of healthcare data, we propose a novel approach for harmonizing data elements (i.e., attributes) across health data standards. This approach focuses on the implicit concept that is represented by a data element. The process includes the following steps: identifying concepts, clustering similar concepts and constructing mapp...

Background: The FAIR (Findable, Accessible, Interoperable, Reusable) data principles are a guideline to improve the reusability of data. However, properly implementing these principles is challenging due to a wide range of barriers. Objectives: To further the field of FAIR data, this study aimed to systematically identify barriers regarding impl...

This paper presents an effort by the World Health Organization (WHO) to integrate the reference classifications of the Family of International Classifications (ICD, ICF, and ICHI) into a unified digital framework. The integration was accomplished via an expanded Content Model and a single Foundation that hosts all entities from these classification...

Introduction The conect4children (c4c) project aims to facilitate efficient planning and delivery of paediatric clinical trials. One objective of c4c is data standardization and reuse. Interoperability and reusability of paediatric clinical trial data is challenging due to a lack of standardization. The Clinical Data Interchange Standards Consortiu...

The reuse of paediatric individual patient data (IPD) from clinical trials (CTs) is essential to overcome specific ethical, regulatory, methodological, and economic issues that hinder the progress of paediatric research. Sharing data through repositories enables the aggregation and dissemination of clinical information, fosters collaboration betwee...

The conect4children (c4c) initiative was established to facilitate the development of new drugs and other therapies for paediatric patients. It is widely recognised that there are not enough medicines tested for all relevant ages of the paediatric population. To overcome this, it is imperative that clinical data from different sources are interoper...

BACKGROUND Patients with melanoma receiving immunotherapy with immune-checkpoint inhibitors (ICIs) often experience immune-related adverse events (AEs), cancer-related fatigue and emotional distress, affecting health-related quality of life (HRQoL) and clinical outcome to immunotherapy. EHealth tools can aid cancer patients in addressing issues suc...

Background Patients with melanoma receiving immunotherapy with immune-checkpoint inhibitors often experience immune-related adverse events, cancer-related fatigue, and emotional distress, affecting health-related quality of life () and clinical outcome to immunotherapy. eHealth tools can aid patients with cancer in addressing issues, such as advers...

Background The prognosis for patients with several types of cancer has substantially improved following the introduction of immune checkpoint inhibitors, a novel type of immunotherapy. However, patients may experience symptoms both from the cancer itself and from the medication. A prototype of the eHealth tool Cancer Patients Better Life Experience...

BACKGROUND The prognosis for patients with several types of cancer has substantially improved following the introduction of immune checkpoint inhibitors, a novel type of immunotherapy. However, patients may experience symptoms both from the cancer itself and from the medication. A prototype of the eHealth tool Cancer Patients Better Life Experience...

Objectives To provide a real-world example on how and to what extent Health Level Seven Fast Healthcare Interoperability Resources (FHIR) implements the Findable, Accessible, Interoperable, and Reusable (FAIR) guiding principles for scientific data. Additionally, presents a list of FAIR implementation choices for supporting future FAIR implementati...

Background The COVID‐19 pandemic negatively affected child and adolescent mental health and at the end of the pandemic (April 2022) child mental health had not returned to pre‐pandemic levels. We investigated whether this observed increase in mental health problems has continued, halted, or reversed after the end of the pandemic in children from th...

Introduction Healthcare data and the knowledge gleaned from it play a key role in improving the health of current and future patients. These knowledge sources are regularly represented as ‘linked’ resources based on the Resource Description Framework (RDF). Making resources ‘linkable’ to facilitate their interoperability is especially important in...

Since 2014, “Bring Your Own Data” workshops (BYODs) have been organised to inform people about the process and benefits of making resources Findable, Accessible, Interoperable, and Reusable (FAIR, and the FAIRification process). The BYOD workshops’ content and format differ depending on their goal, context, and the background and needs of participa...

Background Since treatment with immune checkpoint inhibitors (ICIs) is becoming standard therapy for patients with high-risk and advanced melanoma, an increasing number of patients experience treatment-related adverse events such as fatigue. Until now, studies have demonstrated the benefits of using eHealth tools to provide either symptom monitorin...

Background The COVID-19 pandemic negatively affected child and adolescent mental health and at the end of the pandemic (April 2022) child mental health had not returned to pre‐pandemic levels. We investigated whether this observed increase in mental health problems has continued, halted, or reversed after the end of the pandemic in children from th...

Background: SNOMED CT is a large terminology system designed to represent all aspects of healthcare. Its current form and content result from decades of bottom-up evolution. Due to SNOMED CT’s formal descriptions, it can be considered an ontology. The Basic Formal Ontology (BFO) is a foundational ontology that proposes a small set of disjoint, hier...

Introduction: Healthcare data and the knowledge gleaned from it play a key role in improving the health of current and future patients. These knowledge sources are regularly represented as ‘linked’ resources based on the Resource Description Framework (RDF). Making resources ‘linkable' to facilitate their interoperability is especially important in...

Background: Within the CAPABLE project the authors developed a multi-agent system that relies on a distributed architecture. The system provides cancer patients with coaching advice and supports their clinicians with suitable decisions based on clinical guidelines. Objectives: As in many multi-agent systems we needed to coordinate the activities...

Objective: This paper reports on the development of a dynamic data management planning questionnaire to guide data stewards of the European Reference Network (ERN) rare disease patient registries to make their data findable, accessible, interoperable, and reusable (FAIR). As part of this work, the questionnaire was validated through expert review a...

BACKGROUND Since treatment with immune-checkpoint inhibitors (ICIs) is becoming standard therapy for high-risk and advanced-melanoma patients, an increasing number of patients experience treatment-related adverse events such as fatigue. Until now, studies have demonstrated the benefits of using eHealth tools in providing either symptom monitoring o...

Introduction The Semantic Web community provides a common Resource Description Framework (RDF) that allows representation of resources such that they can be linked. To maximize the potential of linked data - machine-actionable interlinked resources on the Web - a certain level of quality of RDF resources should be established, particularly in the b...

Objective: To address the growing need for effective data reuse in health research, healthcare institutions need to make their data Findable, Accessible, Interoperable, and Reusable (FAIR). A prevailing method to model databases for interoperability is the Observational Medical Outcomes Partnership (OMOP) Common Data Model (CDM), developed by the...

Interoperability between clinical datasets is challenging due to, in part, the number of data models and vocabularies in use and the variety of implementations. Here we describe the first steps in an ongoing effort to achieve interoperability between two clinical datasets currently being constructed within independent international projects. Both a...

Background Medical data can be difficult to comprehend for patients, but only a limited number of patient-friendly terms and definitions are available to clarify medical concepts. Therefore, we developed an algorithm that generalizes diagnoses to more general concepts that do have patient-friendly terms and definitions in SNOMED CT. We implemented...

Background The COVID‐19 pandemic has had an acute impact on child mental and social health, but long‐term effects are still unclear. We examined how child mental health has developed since the start of the COVID‐19 pandemic up to 2 years into the pandemic (April 2022). Methods We included children (age 8–18) from two general population samples (N...

Standardization of data items collected in paediatric clinical trials is an important but challenging issue. The Clinical Data Interchange Standards Consortium (CDISC) data standards are well understood by the pharmaceutical industry but lack the implementation of some paediatric specific concepts. When a paediatric concept is absent within CDISC s...

Introduction: Standardization of data items collected in paediatric clinical trials is an important but challenging issue. The Clinical Data Interchange Standards Consortium (CDISC) data standards are well understood by the pharmaceutical industry but lack the implementation of some paediatric specific concepts. When a paediatric concept is absent...

Background: Data in Electronic Health Records (EHRs) is often poorly structured and standardized, which hampers data reuse. Research described some examples of interventions to increase and improve structured and standardized data, such as guidelines and policies, training and user friendly EHR interfaces. However, little is known about the transl...

Background Problem-oriented electronic health record (EHR) systems, with complete, coded and up-to-date (i.e. accurate) problem lists, aid healthcare providers to track patient’s health status and make better decisions, as problem lists can provide useful summaries of important health issues. Unfortunately, problem lists are still incomplete and ou...

Introduction Rare disease patient data are typically sensitive, present in multiple registries controlled by different custodians, and non-interoperable. Making these data Findable, Accessible, Interoperable, and Reusable (FAIR) for humans and machines at source enables federated discovery and analysis across data custodians. This facilitates accur...

Introduction In the Netherlands, pathology reports are annotated using a nationwide pathology network (PALGA) thesaurus. Annotations must address topography, procedure, and diagnosis. The Pathology Report Annotation Module (PRAM) can be used to annotate the report conclusion with PALGA-compliant code series. The equivalence of these generated annot...

Background The electronic health record (EHR) is central to medical informatics. Its use is also recognized as an important skill for future clinicians. Typically, medical students' first exposure to an EHR is when they start their clinical internships, and medical informatics students may or may not get experience with an EHR before graduation. We...

Background The COVID-19 pandemic has had an acute impact on child mental and social health, but long-term effects are still unclear. We examined how child mental health has developed since the start of the COVID-19 pandemic up to two years into the pandemic (April 2022). Methods We included children (age 8-18) from two general population samples (N...

Background During and after systemic therapy, patients with high risk and advanced melanoma experience challenges regarding cancer-related symptoms, treatment-related adverse events, and an impact of these symptoms on their physical and psychosocial well-being. Few studies have investigated the specific needs of these patients and the potential rol...

Background: Ontology matching should contribute to the interoperability aspect of FAIR data (Findable, Accessible, Interoperable, and Reusable). Multiple data sources can use different ontologies for annotating their data and, thus, creating the need for dynamic ontology matching services. In this experimental study, we assessed the performance of...

The International Society for the Study of Vascular Anomalies (ISSVA) provides a classification for vascular anomalies that enables specialists to unambiguously classify diagnoses. This classification is only available in PDF format and is not machine-readable, nor does it provide unique identifiers that allow for structured registration. In this p...

Background During the Coronavirus disease 2019 (COVID-19) pandemic it became apparent that it is difficult to extract standardized Electronic Health Record (EHR) data for secondary purposes like public health decision-making. Accurate recording of, for example, standardized diagnosis codes and test results is required to identify all COVID-19 patie...

To address current trends in poor health-seeking behaviour and late cancer diagnosis in many low- and middle-income countries, like Uganda, it is important to explore innovative awareness building interventions. One possible intervention is a common digital format, an interactive voice response (IVR) system, which is suitable for individuals with l...

Due to the nature of health data, its sharing and reuse for research are limited by ethical, legal and technical barriers. The FAIR4Health project facilitated and promoted the application of FAIR principles in health research data, derived from the publicly funded health research initiatives to make them Findable, Accessible, Interoperable, and Reu...

The FAIR Data Principles are being rapidly adopted by many research institutes and funders worldwide. This study aimed to assess the awareness and attitudes of clinical researchers and research support staff regarding data FAIRification. A questionnaire was distributed to researchers and support staff in six Dutch University Medical Centers and Ele...

The aim of the study was to assess internalizing problems before and during the pandemic with data from Dutch consortium Child and adolescent mental health and wellbeing in times of the COVID-19 pandemic, consisting of two Dutch general population samples (GS) and two clinical samples (CS) referred to youth/psychiatric care. Measures of internalizi...

The need for health data to be internationally Findable, Accessible, Interoperable and Reusable (FAIR) and thereby support integrative analysis with other datasets has become crystal clear in the ongoing pandemic. The Dutch National Intensive Care Evaluation (NICE) quality registry adopted the Observational Medical Outcomes Partnership Common Datab...

Introduction Rare disease patient data are typically sensitive, present in multiple registries controlled by different custodians, and non-interoperable. Making these data Findable, Accessible, Interoperable, and Reusable (FAIR) for humans and machines at source enables federated discovery and analysis across data custodians. This facilitates accur...

Introduction Medical data can be difficult to comprehend for patients, but only a limited number of patient-friendly terms and definitions is available to clarify medical concepts. Therefore, we developed a technique of generalizing diagnoses to more general concepts that do have patient-friendly terms and definitions in the SNOMED CT Netherlands P...

Background Now that patients increasingly get access to their healthcare records, its contents require clarification. The use of patient-friendly terms and definitions can help patients and their significant others understand their medical data. However, it is costly to make patient-friendly descriptions for the myriad of terms used in the medical...

Background The European Platform on Rare Disease Registration (EU RD Platform) aims to address the fragmentation of European rare disease (RD) patient data, scattered among hundreds of independent and non-coordinating registries, by establishing standards for integration and interoperability. The first practical output of this effort was a set of 1...

Due to the nature of health data, its sharing and reuse for research are limited by ethical, legal and technical barriers. The FAIR4Health project facilitated and promoted the application of FAIR principles in health research data, derived from the publicly funded health research initiatives to make them Findable, Accessible, Interoperable, and Reu...

This handbook aims to support higher education institutions with the integration of FAIR-related content in their curricula and teaching. It was written and edited by a group of about 40 collaborators in a series of six book sprint events that took place between 1 and 10 June 2021. The document provides practical material, such as competence profil...

Background Loss to follow-up (LFTU) among HIV patients remains a major obstacle to achieving treatment goals with the risk of failure to achieve viral suppression and thereby increased HIV transmission. Although use of clinical decision support systems (CDSS) has been shown to improve adherence to HIV clinical guidance, to our knowledge, this is am...

Background Patient data registries that are FAIR—Findable, Accessible, Interoperable, and Reusable for humans and computers—facilitate research across multiple resources. This is particularly relevant to rare diseases, where data often are scarce and scattered. Specific research questions can be asked across FAIR rare disease registries and other F...

Background Low- and middle-income countries, especially in Africa, face a growing cancer burden. Adoption of digital health solutions has the potential to improve cancer care delivery and research in these countries. However, the extent of implementation and the impact of digital health interventions across the cancer continuum in Africa have not b...

The FAIR Principles are supported by various initiatives in the biomedical community. However, little is known about the knowledge and efforts of individual clinical researchers regarding data FAIRification. We distributed an online questionnaire to researchers from six Dutch University Medical Centers, as well as researchers using an Electronic Da...

Ontologies listed in the OBO Foundry are often regarded as reliable choices to be reused but ontology interoperability of them remains unknown. This study evaluated the resolvability of URIs and consistency of axioms in the OBO Foundry library, BFO ontology, and CIDO ontology. All had nonresolvable URIs, but the OBO library and the CIDO had additio...

The aim of the study was to assess internalizing problems before and during the pandemic with data from Dutch consortium Child and adolescent mental health and wellbeing in times of the COVID-19 pandemic, consisting of two Dutch general population samples (GS) and two clinical samples (CS) referred to youth/psychiatric care. In each sample, measure...

Introduction: Existing methods to make data Findable, Accessible, Interoperable, and Reusable (FAIR) are usually carried out in a post-hoc manner: after the research project is conducted and data are collected. De-novo FAIRification, on the other hand, incorporates the FAIRification steps in the process of a research project. In medical research,...

Background The European Platform on Rare Disease Registration (EU RD Platform) aims to address the fragmentation of European rare disease (RD) patient data, scattered among hundreds of independent and non-coordinating registries, by establishing standards for integration and interoperability. The first practical output of this effort was a set of 1...

Background: Patient-accessible electronic health records (PAEHRs) and associated national policies have increasingly been set up over the past two decades. Still little is known about the most effective strategy for developing and implementing PAEHRs. There are many stakeholders to take into account, and previous research focuses on the viewpoints...

The CAncer PAtient Better Life Experience (CAPABLE) project combines the most advanced technologies for data and knowledge management with a socio-psychological approach, to develop a coaching system for improving the quality of life of cancer patients managed at home. The team includes complementary expertise in data- and knowledge-driven AI, data...

BACKGROUND Real World Data (RWD) and Real World Evidence (RWE) have an increasingly important role in clinical research and health care decision making in many countries. In order to leverage RWD and generate reliable RWE, a framework must be in place to ensure that the data is well-defined and structured in a way that is semantically interoperable...

Background: Real-world data (RWD) and real-world evidence (RWE) are playing increasingly important roles in clinical research and health care decision-making. To leverage RWD and generate reliable RWE, data should be well defined and structured in a way that is semantically interoperable and consistent across stakeholders. The adoption of data sta...

Structuring clinical data in electronic health records supports reuse of data to improve quality of care, reduce costs and perform research. This requires terminologies to assign terms from language used in a specific domain to medical concepts. Given the developing character of medical knowledge, these terminologies need continuous maintenance. No...

Background Kidney biopsy registries all over the world benefit research, teaching and health policy. Comparison, aggregation and exchange of data is however greatly dependent on how registration and coding of kidney biopsy diagnoses are performed. This paper gives an overview over kidney biopsy registries, explores how these registries code kidney...

Background As a major public health crisis, the novel coronavirus disease 2019 (COVID-19) pandemic demonstrates the urgent need for safe, effective, and evidence-based implementations of digital health. The urgency stems from the frequent tendency to focus attention on seemingly high promising digital health interventions despite being poorly valid...

Introduction Thanks to improvement of care, cancer has become a chronic condition. But due to the toxicity of treatment, the importance of supporting the quality of life (QoL) of cancer patients increases. Monitoring and managing QoL relies on data collected by the patient in his/her home environment, its integration, and its analysis, which suppor...

Objectives: The study aims at understanding the structural characteristics and content features of COVID-19 literature and public health data from the perspective of the ‘Language and Meaning in Biomedicine’ Working Group (LaMB WG) of IMIA. The LaMB WG has interest in conceptual characteristics, transparency, comparability, and reusability of medic...

Background Accurate, coded problem lists are valuable for data reuse, including clinical decision support and research. However, healthcare providers frequently modify coded diagnoses by including or removing common contextual properties in free-text diagnosis descriptions: uncertainty ( suspected glaucoma ), laterality ( left glaucoma ) and tempor...

Introduction Existing methods to make data Findable, Accessible, Interoperable, and Reusable (FAIR) are usually carried out in a post-hoc manner: after the research project is conducted and data are collected. De-novo FAIRification, on the other hand, incorporates the FAIRification steps in the process of a research project. In medical research, da...

Background Cancer awareness is crucial for cancer care and prevention. However, cancer awareness in Uganda is low, and access to cancer information is limited. Objective This study aims to (1) understand the cancer awareness situation in Uganda (perceptions, beliefs, information needs, and challenges to accessing cancer information) and opinions a...

Background Patients benefit from access to their medical records. However, clinical notes and letters are often difficult to comprehend for most lay people. Therefore, functionality was implemented in the patient portal of a Dutch university medical centre (UMC) to clarify medical terms in free-text data. The clarifications consisted of synonyms an...

Background Patient data registries that are FAIR - Findable, Accessible, Interoperable, and Reusable for humans and computers - facilitate research across multiple resources. This is particularly relevant to rare diseases, where data often are scarce and scattered. Specific research questions can be asked across FAIR rare disease registries and oth...

Background Free-text descriptions in electronic health records (EHRs) can be of interest for clinical research and care optimization. However, free text cannot be readily interpreted by a computer and, therefore, has limited value. Natural Language Processing (NLP) algorithms can make free text machine-interpretable by attaching ontology concepts t...

Background Loss to follow-up (LFTU) among HIV patients continues to be a major obstacle to achieving treatment goals with the risk of failure to achieve viral suppression and thereby increased HIV transmission. Although use of clinical decision support systems (CDSSs) has been shown to improve adherence to HIV clinical guidance, this is the first s...

Introduction - Thanks to improvement of care, cancer has become a chronic condition. But due to the toxicity of treatment, the importance of supporting the quality of life (QoL) of cancer patients increases. Monitoring and managing QoL relies on data collected by the patient in his/her home environment, its integration, and its analysis, which supp...

BACKGROUND Cancer awareness is crucial for effective and satisfactory cancer care and prevention. However, cancer awareness in Uganda is low, and access to cancer information is limited. OBJECTIVE In this paper we describe an mHealth intervention in the form of an Interactive voice response (IVR) system for addressing the low cancer awareness in U...