[The collaborative project "Personalized medicine for oncology" (PM4Onco) as part of the Medical Informatics Initiative (MII)]. / Das Verbundprojekt "Personalisierte Medizin für die Onkologie" (PM4Onco) als Teil der Medizininformatik-Initiative (MII).

The collaborative project Personalized Medicine for Oncology (PM4Onco) was launched in 2023 as part of the National Decade against Cancer (NKD) and is executed within the Medical Informatics Initiative (MII). Its aim is to establish a sustainable infrastructure for the integration and use of data from clinical and biomedical research and therefore combines the experience and preliminary work of all four consortia of the MII and the leading oncology centers in Germany. The data provided by PM4Onco will be prepared in a suitable form to support decision making in molecular tumor boards. This concept and infrastructure will be extended to 23 participating partner sites and thus improve access to targeted therapies based on clinical information and analysis of molecular genetic alterations in tumors at different stages of the disease. This will help to improve the treatment and prognosis of tumor diseases.Clinical cancer registries are involved in the project to improve data quality through standardized documentation routines. Clinical experts advise on the expansion of the core datasets for personalized medicine (PM). Information on quality of life and treatment outcomes reported by patients in questionnaires, which is rarely collected outside of clinical trials, will make a significant contribution. Patient representatives are involved from the onset to ensure that the important perspective of patients is taken into account in the decision-making process. PM4Onco thus creates an alliance between the MII, oncological centers of excellence, clinical cancer registries, young scientists, patients, and citizens to strengthen and advance PM in cancer therapy.

[Digital health progress hubs-data integration beyond university hospitals]. / Die digitalen Fortschrittshubs Gesundheit ­ Gemeinsame Datennutzung über die Universitätsmedizin hinaus.

The digital health progress hubs pilot the extensibility of the concepts and solutions of the Medical Informatics Initiative to improve regional healthcare and research. The six funded projects address different diseases, areas in regional healthcare, and methods of cross-institutional data linking and use. Despite the diversity of the scenarios and regional conditions, the technical, regulatory, and organizational challenges and barriers that the progress hubs encounter in the actual implementation of the solutions are often similar. This results in some common approaches to solutions, but also in political demands that go beyond the Health Data Utilization Act, which is considered a welcome improvement by the progress hubs.In this article, we present the digital progress hubs and discuss achievements, challenges, and approaches to solutions that enable the shared use of data from university hospitals and non-academic institutions in the healthcare system and can make a sustainable contribution to improving medical care and research.

[Data integration centers-from a concept in the Medical Informatics Initiative to its local implementation in the Network of University Medicine]. / Die Datenintegrationszentren ­ Von der Konzeption in der Medizininformatik-Initiative zur lokalen Umsetzung in einem Netzwerk Universitätsmedizin.

As part of the Medical Informatics Initiative (MII), data integration centers (DICs) have been established at 38 university and 3 non-university locations in Germany since 2018. At DICs, research and healthcare data are collected. The DICs represent an important pillar in research and healthcare. They establish the technical, organizational, and (ethical) data protection requirements to enable cross-site research with the available routine clinical data.This article presents the three main pillars of DICs: ethical-legal framework, organization, and technology. The organization of DICs and their organizational embedding and interaction are presented, as well as the technical infrastructure. The services that a DIC provides for its own location and for external researchers are explained, and the role of the DIC as an internal and external interface for strengthening cooperation and collaboration is outlined.Legal conformity, organization, and technology form the basis for the processes and structures of a DIC and are decisive for how it is integrated into the healthcare and research landscape of a location, but also for how it can react to national and European requirements and act and function as an interface to the outside world. In this context and with regard to national developments (e.g., introduction of the electronic patient file-ePA), but also international and European initiatives (e.g., European Health Data Space-EHDS), the DIC will play a central role in the future.

Implementación ágil: un proyecto de respuesta rápida a COVID-19

Webinar organizado por la Red Centroamericana de Informática en Salud (RECAINSA), con la participación de Juan Pablo Hurtado (Compunet Colombia) y Daniela Naranjo (Elsevier Clinical Solutions), realizado el 15 de mayo de 2020.

Evolution and differentiation of the cybersecurity communities in three social question and answer sites: A mixed-methods analysis.

Cybersecurity affects us all in our daily lives. New knowledge on best practices, new vulnerabilities, and timely fixes for cybersecurity issues is growing super-linearly, and is spread across numerous, heterogeneous sources. Because of that, community contribution-based, question and answer sites have become clearinghouses for cybersecurity-related inquiries, as they have for many other topics. Historically, Stack Overflow has been the most popular platform for different kinds of technical questions, including for cybersecurity. That has been changing, however, with the advent of Security Stack Exchange, a site specifically designed for cybersecurity-related questions and answers. More recently, some cybersecurity-related subreddits of Reddit, have become hubs for cybersecurity-related questions and discussions. The availability of multiple overlapping communities has created a complex terrain to navigate for someone looking for an answer to a cybersecurity question. In this paper, we investigate how and why people choose among three prominent, overlapping, question and answer communities, for their cybersecurity knowledge needs. We aggregated data of several consecutive years of cybersecurity-related questions from Stack Overflow, Security Stack Exchange, and Reddit, and performed statistical, linguistic, and longitudinal analysis. To triangulate the results, we also conducted user surveys. We found that the user behavior across those three communities is different, in most cases. Likewise, cybersecurity-related questions asked on the three sites are different, more technical on Security Stack Exchange and Stack Overflow, and more subjective and personal on Reddit. Moreover, there appears to have been a differentiation of the communities along the same lines, accompanied by overall popularity trends suggestive of Stack Overflow's decline and Security Stack Exchange's rise within the cybersecurity community. Reddit is addressing the more subjective, discussion type needs of the lay community, and is growing rapidly.

Human Factors and Organizational Issues Section Synopsis IMIA Yearbook 2021.

OBJECTIVE: To select the best papers that made original and high impact contributions in the area of human factors and organizational issues in biomedical informatics in 2020. METHODS: A rigorous extraction process based on queries from Web of Science® and PubMed/Medline was conducted to identify the scientific contributions published in 2020 that address human factors and organizational issues in biomedical informatics. The screening of papers on titles and abstracts independently by the two section editors led to a total of 1,562 papers. These papers were discussed for a selection of 12 finalist papers, which were then reviewed by the two section editors, two chief editors, and by three external reviewers from internationally renowned research teams. RESULTS: The query process resulted in 12 papers that reveal interesting and rigorous methods and important studies in human factors that move the field forward, particularly in clinical informatics and emerging technologies such as brain-computer interfaces. This year three papers were clearly outstanding and help advance in the field. They provide examples of applying existing frameworks together in novel and highly illuminating ways, showing the value of theory development in human factors. Emerging themes included several which discussed physician burnout, mobile health, and health equity. Those concerning the Corona Virus Disease 2019 (Covid-19) were included as part of that section. CONCLUSION: The selected papers make important contributions to human factors and organizational issues, expanding and deepening our knowledge of how to apply theory and applications of new technologies in health.

COVID-19 reveals the urgent need to strengthen nursing informatics competencies: a view from Peru.

The COVID-19 pandemic requires an urgent action to transform health-care delivery and to promote research and capacity-building nursing programs. Specifically, many countries at the global level have described nursing informatics as an essential competence for nurse professionals. In Peru, nursing personnel represents the largest health workforce group and nursing informatics is still emerging, but the field appear to hold much promise. In this sense, the Peruvian Ministry of Health (MoH) defined in 2020 the core nursing competences, which included a technology and innovation domain. The competence established to apply scientifically based technology and innovation to improve the processes or health service resources. The minimum competencies established by the MoH were as follows: to carry out innovations in processes or resources in their different professional performance areas, to creatively adapt technology in different areas of professional performance, to make rational and ethical use of health technologies with focus on new developments that will be evaluated and applied critically, and to manage information and communication technologies, and health information systems, with emphasis on telehealth (i.e. telemedicine, telecare management, tele-education, and tele-training). Besides the nursing competences defined by the MoH is a good starting point, this special contribution discusses the urgent need to strengthen nursing informatics competencies in Peru.

Development of a data utility framework to support effective health data curation.

OBJECTIVES: The value of healthcare data is being increasingly recognised, including the need to improve health dataset utility. There is no established mechanism for evaluating healthcare dataset utility making it difficult to evaluate the effectiveness of activities improving the data. To describe the method for generating and involving the user community in developing a proposed framework for evaluation and communication of healthcare dataset utility for given research areas. METHODS: Aninitial version of a matrix to review datasets across a range of dimensions wasdeveloped based on previous published findings regarding healthcare data. Thiswas used to initiate a design process through interviews and surveys with datausers representing a broad range of user types and use cases, to help develop afocused framework for characterising datasets. RESULTS: Following 21 interviews, 31 survey responses and testing on 43 datasets, five major categories and 13 subcategories were identified as useful for a dataset, including Data Model, Completeness and Linkage. Each sub-category was graded to facilitate rapid and reproducible evaluation of dataset utility for specific use-cases. Testing of applicability to >40 existing datasets demonstrated potential usefulness for subsequent evaluation in real-world practice. DISCUSSION: Theresearch has developed an evidenced-based initial approach for a framework tounderstand the utility of a healthcare dataset. It likely to require further refinementfollowing wider application and additional categories may be required. CONCLUSION: The process has resulted in a user-centred designed framework for objectively evaluating the likely utility of specific healthcare datasets, and therefore, should be of value both for potential users of health data, and for data custodians to identify the areas to provide the optimal value for data curation investment.

Patient Empowerment During the COVID-19 Pandemic by Ensuring Safe and Fast Communication of Test Results: Implementation and Performance of a Tracking System.

BACKGROUND: Overcoming the COVID-19 crisis requires new ideas and strategies for online communication of personal medical information and patient empowerment. Rapid testing of a large number of subjects is essential for monitoring and delaying the spread of SARS-CoV-2 in order to mitigate the pandemic's consequences. People who do not know that they are infected may not stay in quarantine and, thus, risk infecting others. Unfortunately, the massive number of COVID-19 tests performed is challenging for both laboratories and the units that conduct throat swabs and communicate the results. OBJECTIVE: The goal of this study was to reduce the communication burden for health care professionals. We developed a secure and easy-to-use tracking system to report COVID-19 test results online that is simple to understand for the tested subjects as soon as these results become available. Instead of personal calls, the system updates the status and the results of the tests automatically. This aims to reduce the delay when informing testees about their results and, consequently, to slow down the virus spread. METHODS: The application in this study draws on an existing tracking tool. With this open-source and browser-based online tracking system, we aim to minimize the time required to inform the tested person and the testing units (eg, hospitals or the public health care system). The system can be integrated into the clinical workflow with very modest effort and avoids excessive load to telephone hotlines. RESULTS: The test statuses and results are published on a secured webpage, enabling regular status checks by patients; status checks are performed without the use of smartphones, which has some importance, as smartphone usage diminishes with age. Stress tests and statistics show the performance of our software. CTest is currently running at two university hospitals in Germany-University Hospital Ulm and University Hospital Tübingen-with thousands of tests being performed each week. Results show a mean number of 10 (SD 2.8) views per testee. CONCLUSIONS: CTest runs independently of existing infrastructures, aims at straightforward integration, and aims for the safe transmission of information. The system is easy to use for testees. QR (Quick Response) code links allow for quick access to the test results. The mean number of views per entry indicates a reduced amount of time for both health care professionals and testees. The system is quite generic and can be extended and adapted to other communication tasks.

Digital Health during COVID-19: Informatics Dialogue with the World Health Organization.

BACKGROUND: On December 16, 2020 representatives of the International Medical Informatics Association (IMIA), a Non-Governmental Organization in official relations with the World Health Organization (WHO), along with its International Academy for Health Sciences Informatics (IAHSI), held an open dialogue with WHO Director General (WHO DG) Tedros Adhanom Ghebreyesus about the opportunities and challenges of digital health during the COVID-19 global pandemic. OBJECTIVES: The aim of this paper is to report the outcomes of the dialogue and discussions with more than 200 participants representing different civil society organizations (CSOs). METHODS: The dialogue was held in form of a webinar. After an initial address of the WHO DG, short presentations by the panelists, and live discussions between panelists, the WHO DG and WHO representatives took place. The audience was able to post questions in written. These written discussions were saved with participants' consent and summarized in this paper. RESULTS: The main themes that were brought up by the audience for discussion were: (a) opportunities and challenges in general; (b) ethics and artificial intelligence; (c) digital divide; (d) education. Proposed actions included the development of a roadmap based on the lessons learned from the COVID-19 pandemic. CONCLUSIONS: Decision making by policy makers needs to be evidence-based and health informatics research should be used to support decisions surrounding digital health, and we further propose next steps in the collaboration between IMIA and WHO such as future engagement in the World Health Assembly.

Health Information Management Reimagined: Assessing Current Professional Skills and Industry Demand.

This paper examines the changes affecting the health information management (HIM) professional skill set and industry demand to determine differences affecting practitioners. As the industry continues to experience technological innovation, the responsibilities of the HIM professional are in flux, affecting the required skill set of the changing environment. This research used the American Health Information Management Association salary survey and current job postings to determine whether the workforce has experienced deskilling and whether a theory-practice-gap exists. It also assesses if industry competencies align with the Health Information Management Reimaged perspectives. The results indicate that the workforce has not experienced deskilling, that a theory-practice gap does exist, and that Health Information Management Reimaged is aligned with industry needs.

What it means to be a woman in the field of biomedical informatics: exploring the lived experiences of women managers in the kingdom of Saudi Arabia.

OBJECTIVE: Although women in the field of biomedical informatics (BMI) are part of a golden era, little is known about their lived experiences as informaticians. Guided by feminist standpoint theory, this study aims to understand the impact of social change in the Kingdom of Saudi Arabia- in the form of new policies supporting women and health technological advancements-in the field of BMI and its women informaticians. MATERIALS AND METHODS: We conducted semistructured telephone interviews with 7 women managers in the field of BMI, identified through LinkedIn. We analyzed interview transcripts to generate themes about their lived experiences, how they perceived health information technology tools, identified challenges that may hinder the advancement of the field, and explored the future of BMI from their perspectives. During our analysis, we utilized a feminist theoretical approach. RESULTS: Women managers in the field of BMI shared similar experiences and perspectives. Our analysis generated 10 themes: (1) career beginning, (2) opportunities given, (3) career achievements, (4) gender-based experiences, (5) meaning of BMI, (6) meaning of health information technology tools, (7) challenges, (8) overcoming challenges, (9) future and hopes, and (10) meaning of "2030 Saudi vision." Early in their careers, participants experienced limited opportunities and misperceptions in understanding what the field of informatics represents. Participants did not feel that gender was an issue, despite what feminist theory would have predicted. CONCLUSIONS: Recognizing the lived experiences of women in the field of BMI contributes to our collective understanding of how these experiences may enhance our knowledge of the field.

Medical and health informatics services during and after the COVID-19 pandemic should be virtual, tailored, responsive and interactive: a case study in Belgium.

This is part of a new series in this regular feature regarding trends in the provision of information by health science libraries. By sharing expertise and drawing together relevant trends the series intends to serve as a road map for both health science librarians and health informatics professionals. This article shows how a medical and biomedical research library changed practices, and reassessed user needs for the COVID-19 emergency. Discusses changes to online education (and collaborative working) to provide user-friendly services, researcher support tailored to need and re-visioning library space. J.M.

Development and Optimization of Clinical Informatics Infrastructure to Support Bioinformatics at an Oncology Center.

Translational bioinformatics for therapeutic discovery requires the infrastructure of clinical informatics. In this chapter, we describe the clinical informatics components needed for successful implementation of translational research at a cancer center. This chapter is meant to be an introduction to those clinical informatics concepts that are needed for translational research. For a detailed account of clinical informatics, the authors will guide the reader to comprehensive resources. We provide examples of workflows from Moffitt Cancer Center led by Drs. Perkins and Markowitz. This perspective represents an interesting collaboration as Dr. Perkins is the Chief Medical Information Officer and Dr. Markowitz is a translational researcher in Melanoma with an active informatics component to his laboratory to study the mechanisms of resistance to checkpoint blockade and an active member of the clinical informatics team.

Leveraging Pathology Informatics Concepts to Achieve Discrete Lab Data for Clinical Use and Translational Research.

Clinical practice is most efficient when physicians have the right information, including pathology and laboratory results, at the point of contact with the patient. In downstream workflows, subsequent groups using lab data want to have it available in a format that is easy to manipulate. With the complexity of electronic medical records, hospital information systems, and the need to accommodate data from outside systems, this is not easy to accomplish. By utilizing a group of concepts from clinical and pathology informatics, system implementations may be improved to achieve relevant laboratory data in a format that is usable by healthcare entities to improve patient care and forward endeavors in precision medicine.

Human Factors and Organizational Issues.

OBJECTIVE: To select the best papers that made original and high impact contributions in the area of human factors and organizational issues in biomedical informatics in 2019. METHODS: A rigorous extraction process based on queries from Web of Science® and PubMed/Medline was conducted to identify the scientific contributions published in 2019 that address human factors and organizational issues in biomedical informatics. The screening of papers on titles and abstracts independently by the two editors led to a total of 30 papers. These papers were discussed for a selection of 15 finalist papers, which were then reviewed by the two editors and by three external reviewers from internationally renowned research teams. RESULTS: The query process resulted in 626 papers that reveal interesting and rigorous methods and important studies in human factors that move the field forward, particularly in clinical informatics and emerging technologies such as brain-computer interfaces. This year three papers were clearly outstanding and help advance the field. They provide examples of applying existing frameworks together in novel and highly illuminating ways, showing the value of theory development in human factors. CONCLUSION: The selected papers make important contributions to human factors and organizational issues, expanding and deepening our knowledge of how to apply theory and applications of new technologies in health.

A mid-South chronic disease registry and practice-based research network to address disparities.

OBJECTIVES: To describe an innovative health information technology (HIT) model for supporting community-wide health improvement through multiprovider collaboration in a regional population health registry and practice-based research network (PBRN). STUDY DESIGN: Case study. METHODS: We describe the HIT data structure and governance of the Diabetes Wellness and Prevention Coalition (DWPC) Registry and PBRN based in Memphis, Tennessee. The population served and their characteristics were assessed for all adult patients with at least 1 encounter in a participating health care delivery system from January 1, 2013, to March 31, 2019. Disparities in access and health care utilization were assessed by residential zip code. RESULTS: The DWPC Registry is a chronic disease and population health data warehouse designed to facilitate chronic disease surveillance and tracking of processes and outcomes of care in medically underserved areas of the mid-South. The Registry primarily focuses on obesity-associated chronic conditions such as diabetes, hypertension, hyperlipidemia, and chronic kidney disease. It combines patient data from 7 regional health systems, which include 6 adult hospitals and more than 50 outpatient practices, covering 462,223 adults with 2,032,425 clinic visits and 602,679 hospitalizations and/or emergency department visits from January 1, 2013, to March 31, 2019. The most prevalent chronic conditions include obesity (37.2%), hypertension (34.4%), overweight (26.4%), hyperlipidemia (18.0%), and type 2 diabetes (14.0%). The Registry provides quarterly practice improvement reports to participating clinics, facilitates surveillance of and outreach to patients with unmet health needs, and supports a pragmatic clinical trial and multiple cohort studies. CONCLUSIONS: Regional registries and PBRNs are powerful tools that can support real-world quality improvement and population health efforts to reduce disparities and improve equity in chronic disease care in medically underserved communities across the United States.