Dataset Information

Interviews with experts in rare diseases for the development of clinical decision support system software - a qualitative study.

ABSTRACT: BACKGROUND:Patients with rare diseases (RDs) are often diagnosed too late or not at all. Clinical decision support systems (CDSSs) could support the diagnosis in RDs. The MIRACUM (Medical Informatics in Research and Medicine) consortium, which is one of four funded consortia in the German Medical Informatics Initiative, will develop a CDSS for RDs based on distributed clinical data from ten university hospitals. This qualitative study aims to investigate (1) the relevant organizational conditions for the operation of a CDSS for RDs when diagnose patients (e.g. the diagnosis workflow), (2) which data is necessary for decision support, and (3) the appropriate user group for such a CDSS. METHODS:Interviews were carried out with RDs experts. Participants were recruited from staff physicians at the Rare Disease Centers (RDCs) at the MIRACUM locations, which offer diagnosis and treatment of RDs. An interview guide was developed with a category-guided deductive approach. The interviews were recorded on an audio device and then transcribed into written form. We continued data collection until all interviews were completed. Afterwards, data analysis was performed using Mayring's qualitative content analysis approach. RESULTS:A total of seven experts were included in the study. The results show that medical center guides and physicians from RDC B-centers (with a focus on different RDs) are involved in the diagnostic process. Furthermore, interdisciplinary case discussions between physicians are conducted. The experts explained that RDs exist which cannot be fully differentiated, but rather described only by their overall symptoms or findings: diagnosis is dependent on the disease or disease group. At the end of the diagnostic process, most centers prepare a summary of the patient case. Furthermore, the experts considered both physicians and experts from the B-centers to be potential users of a CDSS. The experts also have different experiences with CDSS for RDs. CONCLUSIONS:This qualitative study is a first step towards establishing the requirements for the development of a CDSS for RDs. Further research is necessary to create solutions by also including the experts on RDs.

SUBMITTER: Schaaf J

PROVIDER: S-EPMC7493382 | biostudies-literature | 2020 Sep

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Interviews with experts in rare diseases for the development of clinical decision support system software - a qualitative study.

Schaaf Jannik J Prokosch Hans-Ulrich HU Boeker Martin M Schaefer Johanna J Vasseur Jessica J Storf Holger H Sedlmayr Martin M

BMC medical informatics and decision making 20200916 1

<h4>Background</h4>Patients with rare diseases (RDs) are often diagnosed too late or not at all. Clinical decision support systems (CDSSs) could support the diagnosis in RDs. The MIRACUM (Medical Informatics in Research and Medicine) consortium, which is one of four funded consortia in the German Medical Informatics Initiative, will develop a CDSS for RDs based on distributed clinical data from ten university hospitals. This qualitative study aims to investigate (1) the relevant organizational c ...[more]

PMID: 32938448

Similar Datasets

Project description:BackgroundRare Diseases (RDs) are difficult to diagnose. Clinical Decision Support Systems (CDSS) could support the diagnosis for RDs. The Medical Informatics in Research and Medicine (MIRACUM) consortium developed a CDSS for RDs based on distributed clinical data from eight German university hospitals. To support the diagnosis for difficult patient cases, the CDSS uses data from the different hospitals to perform a patient similarity analysis to obtain an indication of a diagnosis. To optimize our CDSS, we conducted a qualitative study to investigate usability and functionality of our designed CDSS.MethodsWe performed a Thinking Aloud Test (TA-Test) with RDs experts working in Rare Diseases Centers (RDCs) at MIRACUM locations which are specialized in diagnosis and treatment of RDs. An instruction sheet with tasks was prepared that the participants should perform with the CDSS during the study. The TA-Test was recorded on audio and video, whereas the resulting transcripts were analysed with a qualitative content analysis, as a ruled-guided fixed procedure to analyse text-based data. Furthermore, a questionnaire was handed out at the end of the study including the System Usability Scale (SUS).ResultsA total of eight experts from eight MIRACUM locations with an established RDC were included in the study. Results indicate that more detailed information about patients, such as descriptive attributes or findings, can help the system perform better. The system was rated positively in terms of functionality, such as functions that enable the user to obtain an overview of similar patients or medical history of a patient. However, there is a lack of transparency in the results of the CDSS patient similarity analysis. The study participants often stated that the system should present the user with an overview of exact symptoms, diagnosis, and other characteristics that define two patients as similar. In the usability section, the CDSS received a score of 73.21 points, which is ranked as good usability.ConclusionsThis qualitative study investigated the usability and functionality of a CDSS of RDs. Despite positive feedback about functionality of system, the CDSS still requires some revisions and improvement in transparency of the patient similarity analysis.

Project description:BackgroundRare Diseases (RDs), which are defined as diseases affecting no more than 5 out of 10,000 people, are often severe, chronic and life-threatening. A main problem is the delay in diagnosing RDs. Clinical decision support systems (CDSSs) for RDs are software systems to support clinicians in the diagnosis of patients with RDs. Due to their clinical importance, we conducted a scoping review to determine which CDSSs are available to support the diagnosis of RDs patients, whether the CDSSs are available to be used by clinicians and which functionalities and data are used to provide decision support.MethodsWe searched PubMed for CDSSs in RDs published between December 16, 2008 and December 16, 2018. Only English articles, original peer reviewed journals and conference papers describing a clinical prototype or a routine use of CDSSs were included. For data charting, we used the data items "Objective and background of the publication/project", "System or project name", "Functionality", "Type of clinical data", "Rare Diseases covered", "Development status", "System availability", "Data entry and integration", "Last software update" and "Clinical usage".ResultsThe search identified 636 articles. After title and abstracting screening, as well as assessing the eligibility criteria for full-text screening, 22 articles describing 19 different CDSSs were identified. Three types of CDSSs were classified: "Analysis or comparison of genetic and phenotypic data," "machine learning" and "information retrieval". Twelve of nineteen CDSSs use phenotypic and genetic data, followed by clinical data, literature databases and patient questionnaires. Fourteen of nineteen CDSSs are fully developed systems and therefore publicly available. Data can be entered or uploaded manually in six CDSSs, whereas for four CDSSs no information for data integration was available. Only seven CDSSs allow further ways of data integration. thirteen CDSS do not provide information about clinical usage.ConclusionsDifferent CDSS for various purposes are available, yet clinicians have to determine which is best for their patient. To allow a more precise usage, future research has to focus on CDSSs RDs data integration, clinical usage and updating clinical knowledge. It remains interesting which of the CDSSs will be used and maintained in the future.

Project description:BackgroundThe proliferation of mobile devices has enabled new ways of delivering health services through mobile health systems. Researchers and practitioners emphasize that the design of such systems is a complex endeavor with various pitfalls, including limited stakeholder involvement in design processes and the lack of integration into existing system landscapes. Co-design is an approach used to address these pitfalls. By recognizing users as experts of their own experience, co-design directly involves users in the design process and provides them an active role in knowledge development, idea generation, and concept development.ObjectiveDespite the existence of a rich body of literature on co-design methodologies, limited research exists to guide the co-design of mobile health (mHealth) systems. This study aims to contextualize an existing co-design framework for mHealth applications and construct guidelines to address common challenges of co-designing mHealth systems.MethodsTapping into the knowledge and experience of experts in co-design and mHealth systems development, we conducted an exploratory qualitative study consisting of 16 semistructured interviews. Thereby, a constructivist ontological position was adopted while acknowledging the socially constructed nature of reality in mHealth system development. Purposive sampling across web-based platforms (eg, Google Scholar and ResearchGate) and publications by authors with co-design experience in mHealth were used to recruit co-design method experts (n=8) and mHealth system developers (n=8). Data were analyzed using thematic analysis along with our objectives of contextualizing the co-design framework and constructing guidelines for applying co-design to mHealth systems development.ResultsThe contextualized framework captures important considerations of the mHealth context, including dedicated prototyping and implementation phases, and an emphasis on immersion in real-world contexts. In addition, 7 guidelines were constructed that directly pertain to mHealth: understanding stakeholder vulnerabilities and diversity, health behavior change, co-design facilitators, immersion in the mHealth ecosystem, postdesign advocates, health-specific evaluation criteria, and usage data and contextual research to understand impact.ConclusionsSystem designers encounter unique challenges when engaging in mHealth systems development. The contextualized co-design framework and constructed guidelines have the potential to serve as a shared frame of reference to guide the co-design of mHealth systems and facilitate interdisciplinary collaboration at the nexus of information technology and health research.

Project description:BackgroundMoving to electronic health records (EHRs) confers substantial benefits but risks unintended consequences. Modern EHRs consist of complex software code with extensive local configurability options, which can introduce defects. Defects in clinical decision support (CDS) tools are surprisingly common. Feasible approaches to prevent and detect defects in EHR configuration, including CDS tools, are needed. In complex software systems, use of test-driven development and automated regression testing promotes reliability. Test-driven development encourages modular, testable design and expanding regression test coverage. Automated regression test suites improve software quality, providing a "safety net" for future software modifications. Each automated acceptance test serves multiple purposes, as requirements (prior to build), acceptance testing (on completion of build), regression testing (once live), and "living" design documentation. Rapid-cycle development or "agile" methods are being successfully applied to CDS development. The agile practice of automated test-driven development is not widely adopted, perhaps because most EHR software code is vendor-developed. However, key CDS advisory configuration design decisions and rules stored in the EHR may prove amenable to automated testing as "executable requirements."ObjectiveWe aimed to establish feasibility of acceptance test-driven development of clinical decision support advisories in a commonly used EHR, using an open source automated acceptance testing framework (FitNesse).MethodsAcceptance tests were initially constructed as spreadsheet tables to facilitate clinical review. Each table specified one aspect of the CDS advisory's expected behavior. Table contents were then imported into a test suite in FitNesse, which queried the EHR database to automate testing. Tests and corresponding CDS configuration were migrated together from the development environment to production, with tests becoming part of the production regression test suite.ResultsWe used test-driven development to construct a new CDS tool advising Emergency Department nurses to perform a swallowing assessment prior to administering oral medication to a patient with suspected stroke. Test tables specified desired behavior for (1) applicable clinical settings, (2) triggering action, (3) rule logic, (4) user interface, and (5) system actions in response to user input. Automated test suite results for the "executable requirements" are shown prior to building the CDS alert, during build, and after successful build.ConclusionsAutomated acceptance test-driven development and continuous regression testing of CDS configuration in a commercial EHR proves feasible with open source software. Automated test-driven development offers one potential contribution to achieving high-reliability EHR configuration. Vetting acceptance tests with clinicians elicits their input on crucial configuration details early during initial CDS design and iteratively during rapid-cycle optimization.

Project description:IntroductionChild and adolescent mental health services (CAMHS) clinical decision support system (CDSS) provides clinicians with real-time support as they assess and treat patients. CDSS can integrate diverse clinical data for identifying child and adolescent mental health needs earlier and more comprehensively. Individualized Digital Decision Assist System (IDDEAS) has the potential to improve quality of care with enhanced efficiency and effectiveness.MethodsWe examined IDDEAS usability and functionality in a prototype for attention deficit hyperactivity disorder (ADHD), using a user-centered design process and qualitative methods with child and adolescent psychiatrists and clinical psychologists. Participants were recruited from Norwegian CAMHS and were randomly assigned patient case vignettes for clinical evaluation, with and without IDDEAS. Semi-structured interviews were conducted as one part of testing the usability of the prototype following a five-question interview guide. All interviews were recorded, transcribed, and analyzed following qualitative content analysis.ResultsParticipants were the first 20 individuals from the larger IDDEAS prototype usability study. Seven participants explicitly stated a need for integration with the patient electronic health record system. Three participants commended the step-by-step guidance as potentially helpful for novice clinicians. One participant did not like the aesthetics of the IDDEAS at this stage. All participants were pleased about the display of the patient information along with guidelines and suggested that wider guideline coverage will make IDDEAS much more useful. Overall, participants emphasized the importance of maintaining the clinician as the decision-maker in the clinical process, and the overall potential utility of IDDEAS within Norwegian CAMHS.ConclusionChild and adolescent mental health services psychiatrists and psychologists expressed strong support for the IDDEAS clinical decision support system if better integrated in daily workflow. Further usability assessments and identification of additional IDDEAS requirements are necessary. A fully functioning, integrated version of IDDEAS has the potential to be an important support for clinicians in the early identification of risks for youth mental disorders and contribute to improved assessment and treatment of children and adolescents.

Project description:BACKGROUND:Indonesia shoulders a significant tobacco burden, with almost two million cases of tobacco-related illnesses and more than two hundred thousand tobacco-related deaths annually. Indonesian tobacco control is progressing but lags behind other countries. Our study evaluates factors that contribute to the slow progress of tobacco policy change in Indonesia from the perspective of tobacco control experts (TCEs). METHOD:We conducted qualitative interviews with four international and ten national TCEs, who have been active in tobacco control for at least 5?years. Our interview guideline included questions on the current tobacco control situation in Indonesia and explored reasons why tobacco control is progressing so slowly. The interviews were conducted either in English or Bahasa Indonesia, recorded and then transcribed verbatim. We conducted a thematic analysis based on five core causal factors for policy adoption: institutions, networks, socio-economic factors, agendas and ideas. RESULTS:The multistage delay of tobacco policy adoption is principally due to political structures and policy hierarchy, complex bureaucracy, unclear roles and responsibilities, and a high degree of corruption. The low bargaining position and lack of respect for the Ministry of Health also contributes. There are contrasting frames of tobacco as a strategic economic asset and tobacco control as a sovereignty threat. There is an imbalance of power and influence between well entrenched and resourced tobacco industry networks compared to relatively young and less established tobacco control networks. The policy agenda is likely influenced by the privileged position of tobacco in Indonesia as a socially acceptable product with high consumption. There are constraints on transferring ideas and evidence to successful policy adoption. CONCLUSION:Tobacco companies have substantially influenced both policy decisions and public perceptions, signifying a power imbalance within the government system and broader networks. Acceding to and enforcing the World Health Organization- Framework Convention on Tobacco Control (WHO-FCTC) would enable the Indonesian government to shift the power imbalance towards public health stakeholders. Tobacco control advocates must enhance their network cohesion and embrace other community groups to improve engagement and communication with policymakers.

Dataset Information

Interviews with experts in rare diseases for the development of clinical decision support system software - a qualitative study.

Publications

Interviews with experts in rare diseases for the development of clinical decision support system software - a qualitative study.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets