Tanja Stamm’s research while affiliated with Medical University of Vienna and other places

With the digitalization of the healthcare system the need for standardization of data access has drastically increased. At the same time a push to more strongly include patients in the medical process created demand for them to have more access on their own data. These developments led to the creation of both FHIR and SMART on FHIR and has peaked in the Health Outcomes Observatory (H2O) project’s effort to establish patient-reported outcomes as a standard tool for patient perspective inclusion in healthcare. This paper aims to show that these technologies allow to achieve the goals set out by the H2O project using solely open-source solutions.

Objectives This work aims to develop a methodology for transforming Health Level 7 (HL7) Clinical Document Architecture (CDA) documents into the Observational Medical Outcomes Partnership (OMOP) Common Data Model (CDM). The described method seeks to improve the Extract, Transform, Load (ETL) design process by using HL7 CDA Template definitions and the CDA Refined Message Information Model (CDA R-MIM). Material and Methods Our approach utilizes HL7 CDA Templates to define structural and semantic mappings. Supported by the CDA R-MIM for semantic alignment with the OMOP CDM, we developed a tool named CDA Rabbit that enables the generation of Rabbit-In-a-Hat project files from HL7 CDA Template definitions and could be successfully integrated into the existing toolchain around OMOP. Results We tested our approach using 13 CDA Templates from the Austrian national EHR System (ELGA) and 430 anonymized CDA test documents that were mapped to 10 OMOP CDM tables. The data quality assessment, using OMOP’s DataQualityDashboard, showed a 99% pass rate, indicating a robust and accurate data transformation. Conclusion This study presents a novel framework for transforming HL7 CDA documents into OMOP CDM using template definitions and CDA R-MIM. The methodology improves semantic interoperability, mapping reusability, and ETL design efficiency. Future work should focus on automating code generation, improving data profiling, and addressing cyclic dependencies within CDA templates. The presented approach supports improved secondary use of health data and research while adhering to standardized data models and semantics. Discussion Using CDA Templates for ETL design addresses common ETL challenges, such as data accessibility during ETL design, by decoupling the process from the actual CDA instances. Future work could focus on extending this approach to automatically generate boilerplate code, address cyclic dependencies within CDA Templates, and adapt the method for the use with FHIR profiles.

Objective When it comes to prospective studies on the incidence of rheumatoid arthritis (RA), the Norfolk study from 1994 is still frequently cited as prospective incidence data by many countries lacking comprehensive RA registries, including Austria. The aim of this study was, therefore, to gather robust data on the incidence of RA among Austrian adults for the first time. Methods All Upper Austrian rheumatologists reported newly diagnosed RA patients with symptom onset between 2016 and 2018, together with demographic data, laboratory and radiographic results. Cases still unclear at the end of 2018 were tracked in an extended observation period until 2023. Results In total, 701 RA cases were reported. 583 complete patient datasets were analysed. In all 551 individuals with a mean age of 60.2 (±14.2) years, 359 (65.2%) being females, the diagnosis of RA was ascertained clinically by a rheumatologist, optionally applying RA-classification criteria. Across all 3 years, the annual RA incidence rate was 14.9/100 000 (95% CI 12.9 to 17.3), ranging from 20.0/100 000 (95% CI 17.6 to 22.7) in 2016 to 13.5/100 000 (95% CI 11.5 to 15.7) in 2017 and 11.3/100 000 (95% CI 9.5 to 13.3) in 2018. The incidence was highest in individuals >65 years (21.6/100 000, 95% CI 16.4 to 27.9). Women had a higher RA incidence (18.1/100 000, 95% CI 14.9 to 21.7) than men (10.4/100 000, 95% CI 8.0 to 13.3). Conclusions This study provided prospective population-based data on the incidence of RA in Austrian adults for the first time. Incidence rates were comparable with other European countries. Compared with the Norfolk study, we found lower rates in both genders, more pronounced in females, however.

Purpose The mere-measurement effect is the phenomenon in which subjects exposed to measurements have their perceptions and/or behaviors on the inquired topic affected simply through the act of responding. Patient-reported outcomes (PROs) are increasingly used to assess patient perspective and quality of life in clinical trials and different health care settings. This systematic literature review aims to assess what is currently known about the mere-measurement effect of PROs. Methods A systematic literature review and meta-analysis was conducted. We included studies that provided evidence on perceptual or behavioral changes in patients as a result of exposure to questionnaire items assessing PROs. All adult participants were included regardless of demographics. Any study design was considered eligible for inclusion. The databases MEDLINE [PubMed], CINAHL [Ebsco], Web of Science and ScienceDirect were searched. Results The search resulted in 636 articles which led to a final extraction of nine. Overall, seven of the nine articles reported a significant main effect, i.e. presence of the mere-measurement effect. For the meta-analysis, thirteen different interventions were included. There was a one-directional, positive and significant overall risk ratio of 1.17 [CI95% 1.04;1.30]. Conclusion This systematic review found significant potential for the mere-measurement effect to shape respondents’ behaviors or perceptions for the better, opening the door to the possibility of engineering PROs to serve as a subtle intervention. Future considerations and directions for research are discussed.

Background People with hand osteoarthritis (OA) often have poor access to recommended treatments. To enhance care quality, quality indicators (QIs) based on clinical recommendations are essential. Current QI sets, like the Osteoarthritis Quality Indicator Questionnaire (OA-QI v.2), primarily address hip- and knee OA, and not hand OA. Objectives To adapt the OA-QI v.2 for assessing patient-reported quality of hand OA care. Design We used the OA-QI v.2. set as a starting point and adapted it to reflect hand OA care. A literature search was performed to identify potential QIs for hand OA following the Rand/UCLA Appropriateness method. A European expert panel, comprising researchers, clinicians, and patient research partners, participated in online meetings to discuss adaptation and suggest new QIs based on treatment recommendations for hand OA, and anonymously rated each suggested QI regarding its importance, validity, usefulness, and feasibility. Consensus was defined by predefined rating cut-off scores. The adapted questionnaire was translated from English into Norwegian. Cognitive debriefing interviews with Norwegian and UK hand OA patients were conducted to ensure clarity. Results Our initial literature search provided 1670 articles, with none describing relevant QIs. After three voting rounds, sixteen QI items reached consensus, reflecting current hand OA care standards. Items were generally well understood, requiring only minor clarity amendments after patient interviews (N = 28). Conclusion The OA-QI v.2 was successfully adapted into a 16-item Hand OA-QI set ensuring alignment with international care standards for hand OA through literature review, international expert panels and patient feedback on language and layout.