scholarly journals MIRACUM: Medical Informatics in Research and Care in University Medicine

2018 ◽  
Vol 57 (S 01) ◽  
pp. e82-e91 ◽  
Author(s):  
Hans-Ulrich Prokosch ◽  
Till Acker ◽  
Johannes Bernarding ◽  
Harald Binder ◽  
Martin Boeker ◽  
...  
Keyword(s):  
Health System ◽  
Data Sharing ◽  
Medical Informatics ◽  
Building Blocks ◽  
Use Cases ◽  
Common Data Model ◽  
Learning Health System ◽  
Tumor Boards ◽  
Patient Consent ◽  
German Cities

Summary Introduction: This article is part of the Focus Theme of Methods of Information in Medicine on the German Medical Informatics Initiative. Similar to other large international data sharing networks (e.g. OHDSI, PCORnet, eMerge, RD-Connect) MIRACUM is a consortium of academic and hospital partners as well as one industrial partner in eight German cities which have joined forces to create interoperable data integration centres (DIC) and make data within those DIC available for innovative new IT solutions in patient care and medical research. Objectives: Sharing data shall be supported by common interoperable tools and services, in order to leverage the power of such data for biomedical discovery and moving towards a learning health system. This paper aims at illustrating the major building blocks and concepts which MIRACUM will apply to achieve this goal. Governance and Policies: Besides establishing an efficient governance structure within the MIRACUM consortium (based on the steering board, a central administrative office, the general MIRACUM assembly, six working groups and the international scientific advisory board), defining DIC governance rules and data sharing policies, as well as establishing (at each MIRACUM DIC site, but also for MIRACUM in total) use and access committees are major building blocks for the success of such an endeavor. Architectural Framework and Methodology: The MIRACUM DIC architecture builds on a comprehensive ecosystem of reusable open source tools (MIRACOLIX), which are linkable and interoperable amongst each other, but also with the existing software environment of the MIRACUM hospitals. Efficient data protection measures, considering patient consent, data harmonization and a MIRACUM metadata repository as well as a common data model are major pillars of this framework. The methodological approach for shared data usage relies on a federated querying and analysis concept. Use Cases: MIRACUM aims at proving the value of their DIC with three use cases: IT support for patient recruitment into clinical trials, the development and routine care implementation of a clinico-molecular predictive knowledge tool, and molecular-guided therapy recommendations in molecular tumor boards. Results: Based on the MIRACUM DIC release in the nine months conceptual phase first large scale analysis for stroke and colorectal cancer cohorts have been pursued. Discussion: Beyond all technological challenges successfully applying the MIRACUM tools for the enrichment of our knowledge about diagnostic and therapeutic concepts, thus supporting the concept of a Learning Health System will be crucial for the acceptance and sustainability in the medical community and the MIRACUM university hospitals.

scholarly journals HiGHmed – An Open Platform Approach to Enhance Care and Research across Institutional Boundaries

2018 ◽  
Vol 57 (S 01) ◽  
pp. e66-e81 ◽  
Author(s):  
Birger Haarbrandt ◽  
Björn Schreiweis ◽  
Sabine Rey ◽  
Ulrich Sax ◽  
Simone Scheithauer ◽  
...  
Keyword(s):  
Infection Control ◽  
Medical Informatics ◽  
Shared Governance ◽  
Semantic Interoperability ◽  
Use Cases ◽  
System Architectures ◽  
Governance Framework ◽  
Open Platform ◽  
Platform Architecture ◽  
Patient Consent

Summary Introduction: This article is part of the Focus Theme of Methods of Information in Medicine on the German Medical Informatics Initiative. HiGHmed brings together 24 partners from academia and industry, aiming at improvements in care provision, biomedical research and epidemiology. By establishing a shared information governance framework, data integration centers and an open platform architecture in cooperation with independent healthcare providers, the meaningful reuse of data will be facilitated. Complementary, HiGHmed integrates a total of seven Medical Informatics curricula to develop collaborative structures and processes to train medical informatics professionals, physicians and researchers in new forms of data analytics. Governance and Policies: We describe governance structures and policies that have proven effective during the conceptual phase. These were further adapted to take into account the specific needs of the development and networking phase, such as roll-out, carerelated aspects and our focus on curricula development in Medical Inform atics. Architectural Framework and Methodology: To address the challenges of organizational, technical and semantic interoperability, a concept for a scalable platform architecture, the HiGHmed Platform, was developed. We outline the basic principles and design goals of the open platform approach as well as the roles of standards and specifications such as IHE XDS, openEHR, SNOMED CT and HL7 FHIR. A shared governance framework provides the semantic artifacts which are needed to establish semantic interoperability. Use Cases: Three use cases in the fields of oncology, cardiology and infection control will demonstrate the capabilities of the HiGHmed approach. Each of the use cases entails diverse challenges in terms of data protection, privacy and security, including clinical use of genome sequencing data (oncology), continuous longitudinal monitoring of physical activity (cardiology) and cross-site analysis of patient movement data (infection control). Discussion: Besides the need for a shared governance framework and a technical infrastructure, backing from clinical leaders is a crucial factor. Moreover, firm and sustainable commitment by participating organizations to collaborate in further development of their information system architectures is needed. Other challenges including topics such as data quality, privacy regulations, and patient consent will be addressed throughout the project.

scholarly journals Towards a Semantic Data Harmonization Federated Infrastructure

2021 ◽  
Author(s):  
Catalina Martinez-Costa ◽  
Francisco Abad-Navarro
Keyword(s):  
Data Integration ◽  
Data Sharing ◽  
Medical Informatics ◽  
Data Representation ◽  
Heterogeneous Data ◽  
Common Data Model ◽  
Snomed Ct ◽  
Data Harmonization ◽  
Semantic Data ◽  
Upper Level

Data integration is an increasing need in medical informatics projects like the EU Precise4Q project, in which multidisciplinary semantically and syntactically heterogeneous data across several institutions needs to be integrated. Besides, data sharing agreements often allow a virtual data integration only, because data cannot leave the source repository. We propose a data harmonization infrastructure in which data is virtually integrated by sharing a semantically rich common data representation that allows their homogeneous querying. This common data model integrates content from well-known biomedical ontologies like SNOMED CT by using the BTL2 upper level ontology, and is imported into a graph database. We successfully integrated three datasets and made some test queries showing the feasibility of the approach.

scholarly journals Commercial use of health data in the dock – results of a public “trial”

2018 ◽  
Vol 3 (4) ◽  
Author(s):  
Mary Tully ◽  
Lamiece Hassan ◽  
Malcolm Oswald ◽  
John Ainsworth
Keyword(s):  
Health System ◽  
Data Sharing ◽  
Health Data ◽  
Positive Health ◽  
Prior Beliefs ◽  
The Public ◽  
Public Benefit ◽  
Learning Health System ◽  
Research Initiative ◽  
Private And Public

IntroductionSurveys suggest that there is a dichotomy in how citizens view research for public good and research for commercial gain. As a consequence, the idea that a research initiative, such as a learning health system, for both public and commercial benefit may be controversial and reduce public trust. Objectives and ApproachThis study aims to investigate what informed citizens considered to be appropriate uses of health data in a learning health system. Two paired four-day juries were run, with different jurors but the same purpose, expert witnesses and facilitators. Overall, 694 people applied to be jurors; 36 were selected to match criteria based on national demographics and their prior privacy views. Jurors considered whether and why eight exemplar data uses of depersonalised patient data were acceptable. The exemplars were data uses planned by the learning health system initiative to improve care pathways (planned uses), and possible unplanned data uses. ResultsAll planned uses were considered appropriate by most, but not all, jurors, as they had the potential of benefitting the public through improving care. Positive health outcomes were more acceptable than improved efficiency of services, given jurors prior beliefs about how the NHS operates raising concerns about whether improving efficiency would lead to inequitable distribution or closure of services. The potential uses were considered appropriate where there were improvements in drugs, treatments, or lower NHS costs. Some jurors became more accepting of commercial uses as they understood them better. Commercial uses that prioritised generating profit and did not produce health benefits for the public were unacceptable, regardless of any safeguards for the data. Commercial gain that occurred secondary to achieving public benefit were generally accepted. Conclusion/ImplicationsJuries elicit more informed and nuanced judgement from citizens than surveys. Jurors tended to be more accepting of data sharing to both private and public sector after the jury process. Many jurors accept commercial gain if public benefit is achieved. Some were suspicious of data sharing for efficiency gains.

scholarly journals SwissPedData: Standardising hospital records for the benefit of paediatric research

2021 ◽  
Author(s):  
Manon Jaboyedoff ◽  
Milenko Rakic ◽  
Sara Bachmann ◽  
Christoph Berger ◽  
Manuel Diezi ◽  
...  
Keyword(s):  
Health System ◽  
Current Status ◽  
Common Data Model ◽  
Children's Hospitals ◽  
Common Data Elements ◽  
Learning Health System ◽  
Children’S Hospitals ◽  
New Evidence ◽  
Main Module ◽  
The Way

Background Improvement of paediatric healthcare is hampered by inefficient processes of generating new evidence. Clinical research often requires extra encounters with patients, is costly, takes place in an artificial situation with a biased selection of patients, and entails long delays until new evidence is implemented into health care. Electronic health records (EHR) contain detailed information on real patients and cover the entirety of patients. However, the use of EHR for research is limited because they are not standardized between hospitals. This leads to disproportionate amounts of work for extracting data of interest and frequently data are incomplete and of poor quality. Aims SwissPedData aims to lay the foundation for a paediatric learning health system in Switzerland by facilitating EHR-based research. In this project, we aimed to assess the way routine clinical data are currently recorded in large paediatric clinics in Switzerland and to develop a national EHR-based common data model (CDM) that covers all processes of routine paediatric care in hospitals. Methods A taskforce of paediatricians from large Swiss children's hospitals reviewed the current status of routine data documentation in paediatric clinical care and the extent of digitalization. We then used a modified Delphi method to reach a broad consensus on a national EHR-based CDM. Results All Swiss children's hospitals use EHR to document some or all aspects of care. 119 paediatricians, representing eight hospitals and all paediatric subspecialties, participated in an extended Delphi process to create SwissPedData. The group agreed on a national CDM that comprises a main module with general paediatric data and sub-modules relevant to paediatric subspecialties. The data dictionary includes 336 common data elements (CDEs): 76 in the main module on general paediatrics and between 11 and 59 CDEs per subspecialty module. Among these, 266 were classified as mandatory, 52 as recommended and 18 as optional. Conclusion SwissPedData is a CDM for information to be collected in EHR of Swiss children's hospitals. It covers all care processes including clinical and paraclinical assessment, diagnosis, treatment, disposition and care site. All participating hospitals agreed to implement SwissPedData in their clinical routine and clinic information systems. This will pave the way for a national paediatric learning health system in Switzerland that enables fast and efficient answers to urgent clinical questions by facilitating high-quality nationwide retrospective and prospective observational studies and recruitment of patients for nested prospective studies and clinical trials.

Generating Knowledge from Best Care: Advancing the Continuously Learning Health System

2016 ◽  
Vol 6 (9) ◽  
Author(s):  
Edward Abraham ◽  
◽  
Carlos Blanco ◽  
Celeste Castillo Lee ◽  
Jennifer B. Christian ◽  
...  
Keyword(s):  
Health System ◽  
Learning Health System

scholarly journals Sustainable generation of patient‐led resources in a learning health system

2021 ◽  
Author(s):  
Jennie David ◽  
Catalina Berenblum Tobi ◽  
Samantha Kennedy ◽  
Alexander Jofriet ◽  
Madeleine Huwe ◽  
...  
Keyword(s):  
Health System ◽  
Learning Health System

scholarly journals 22.F. Workshop: What makes for resilient health systems? Evidence from the State of Health in the EU country profiles

2020 ◽  
Vol 30 (Supplement_5) ◽  
Author(s):  
◽  
Keyword(s):  
Health System ◽  
Health Systems ◽  
Building Blocks ◽  
The State ◽  
Lessons Learned ◽  
Three Dimensions ◽  
Health System Strengthening ◽  
New Work ◽  
State Of Health ◽  
The Eu

Abstract The European Commission's State of Health in the EU (SoHEU) initiative aims to provide factual, comparative data and insights into health and health systems in EU countries. The resulting Country Health Profiles, published every two years (current editions: November 2019) are the joint work of the European Observatory on Health Systems and Policies and the OECD, in cooperation with the European Commission. They are designed to support the efforts of Member States in their evidence-based policy making and to contribute to health care systems' strengthening. In addition to short syntheses of population health status, determinants of health and the organisation of the health system, the Country Profiles provide an assessment of the health system, looking at its effectiveness, accessibility and resilience. The idea of resilient health systems has been gaining traction among policy makers. The framework developed for the Country Profiles template sets out three dimensions and associated policy strategies and indicators as building blocks for assessing resilience. The framework adopts a broader definition of resilience, covering the ability to respond to extreme shocks as well as measures to address more predictable and chronic health system strains, such as population ageing or multimorbidity. However, the current framework predates the onset of the novel coronavirus pandemic as well as new work on resilience being done by the SoHEU project partners. This workshop aims to present resilience-enhancing strategies and challenges to a wide audience and to explore how using the evidence from the Country Profiles can contribute to strengthening health systems and improving their performance. A brief introduction on the SoHEU initiative will be followed by the main presentation on the analytical framework on resilience used for the Country Profiles. Along with country examples, we will present the wider results of an audit of the most common health system resilience strategies and challenges emerging from the 30 Country Profiles in 2019. A roundtable discussion will follow, incorporating audience contributions online. The Panel will discuss the results on resilience actions from the 2019 Country Profiles evidence, including: Why is resilience important as a practical objective and how is it related to health system strengthening and performance? How can countries use their resilience-related findings to steer national reform efforts? In addition, panellists will outline how lessons learned from country responses to the Covid-19 pandemic and new work on resilience by the Observatory (resilience policy briefs), OECD (2020 Health at a Glance) and the EC (Expert Group on Health Systems Performance Assessment (HSPA) Report on Resilience) can feed in and improve the resilience framework that will be used in the 2021 Country Profiles. Key messages Knowing what makes health systems resilient can improve their performance and ability to meet the current and future needs of their populations. The State of Health in the EU country profiles generate EU-wide evidence on the common resilience challenges facing countries’ health systems and the strategies being employed to address them.

scholarly journals Diagnostics and monitoring tools for noncommunicable diseases: a missing component in the global response

2021 ◽  
Vol 17 (1) ◽  
Author(s):  
Antonio Bernabé-Ortiz ◽  
Jessica H. Zafra-Tanaka ◽  
Miguel Moscoso-Porras ◽  
Rangarajan Sampath ◽  
Beatrice Vetter ◽  
...  
Keyword(s):  
Health System ◽  
New Technologies ◽  
Action Plan ◽  
Building Blocks ◽  
Communicable Diseases ◽  
Noncommunicable Disease ◽  
World Health ◽  
Noncommunicable Diseases ◽  
Diagnostic Tools ◽  
Monitoring Tools

AbstractA key component of any health system is the capacity to accurately diagnose individuals. One of the six building blocks of a health system as defined by the World Health Organization (WHO) includes diagnostic tools. The WHO’s Noncommunicable Disease Global Action Plan includes addressing the lack of diagnostics for noncommunicable diseases, through multi-stakeholder collaborations to develop new technologies that are affordable, safe, effective and quality controlled, and improving laboratory and diagnostic capacity and human resources. Many challenges exist beyond price and availability for the current tools included in the Package of Essential Noncommunicable Disease Interventions (PEN) for cardiovascular disease, diabetes and chronic respiratory diseases. These include temperature stability, adaptability to various settings (e.g. at high altitude), need for training in order to perform and interpret the test, the need for maintenance and calibration, and for Blood Glucose Meters non-compatible meters and test strips. To date the issues surrounding access to diagnostic and monitoring tools for noncommunicable diseases have not been addressed in much detail. The aim of this Commentary is to present the current landscape and challenges with regards to guidance from the WHO on diagnostic tools using the WHO REASSURED criteria, which define a set of key characteristics for diagnostic tests and tools. These criteria have been used for communicable diseases, but so far have not been used for noncommunicable diseases. Diagnostic tools have played an important role in addressing many communicable diseases, such as HIV, TB and neglected tropical diseases. Clearly more attention with regards to diagnostics for noncommunicable diseases as a key component of the health system is needed.

scholarly journals Health system gaps in cardiovascular disease prevention and management in Nepal

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Archana Shrestha ◽  
Rashmi Maharjan ◽  
Biraj Man Karmacharya ◽  
Swornim Bajracharya ◽  
Niharika Jha ◽  
...  
Keyword(s):  
Human Resources ◽  
Health System ◽  
Health Systems ◽  
National Health ◽  
Task Force ◽  
Health Spending ◽  
Building Blocks ◽  
Critical System ◽  
Government Organizations ◽  
The Government

Abstract Background Cardiovascular diseases (CVDs) are the leading cause of deaths and disability in Nepal. Health systems can improve CVD health outcomes even in resource-limited settings by directing efforts to meet critical system gaps. This study aimed to identify Nepal’s health systems gaps to prevent and manage CVDs. Methods We formed a task force composed of the government and non-government representatives and assessed health system performance across six building blocks: governance, service delivery, human resources, medical products, information system, and financing in terms of equity, access, coverage, efficiency, quality, safety and sustainability. We reviewed 125 national health policies, plans, strategies, guidelines, reports and websites and conducted 52 key informant interviews. We grouped notes from desk review and transcripts’ codes into equity, access, coverage, efficiency, quality, safety and sustainability of the health system. Results National health insurance covers less than 10% of the population; and more than 50% of the health spending is out of pocket. The efficiency of CVDs prevention and management programs in Nepal is affected by the shortage of human resources, weak monitoring and supervision, and inadequate engagement of stakeholders. There are policies and strategies in place to ensure quality of care, however their implementation and supervision is weak. The total budget on health has been increasing over the past five years. However, the funding on CVDs is negligible. Conclusion Governments at the federal, provincial and local levels should prioritize CVDs care and partner with non-government organizations to improve preventive and curative CVDs services.

Sign in / Sign up

Export Citation Format

Share Document