[Knowledge and attitudes towards sharing of health data: Results of a population survey]. / Wissen und Einstellung zur Speicherung und Nutzung von Gesundheitsdaten: Ergebnisse einer Bevölkerungsbefragung.

OBJECTIVE: The article tackles various issues arising in the context of the process of digitalization in the health sector. The communication and availability of health data, health registers, the electronic health record, consent procedures for the transfer of data and access to health data for research are considered. METHODS: The study is based on a computer-assisted telephone survey (dual-frame) of a random sample of adult people living in Germany. Data was collected in the period between June 01 and June 27, 2022 (n = 1,308). RESULTS: The level of knowledge concerning the transmission of health data to health insurers is good, whereas the existence of central death-, vaccination- and health registers as well as the access to health data by treating physicians is overestimated. The general acceptance of medical registers is very high. Half the population is unfamiliar with the electronic health record, and the willingness to use it is rather low. An opt-in procedure is preferred when transferring data, and more than eighty percent would release data in their electronic health file for research purposes. Three quarters would consent that their health data be handed over to general research, especially if reserach facilities were situated at German universities, under the condition that their data be treated confidentiallly. The willingness to release data correlates with the level of trust in the press as well as in universities and colleges and decreases when a data leak is considered to be serious. DISCUSSION AND CONCLUSION: In Germany, as in other European countries, we observe a great willingness of people to release health data for research purposes. However, the propensity to use the electronic health file is comparatively low, as is the acceptance of an opt-out procedure, which in the literature is considered a prerequisite for the successful implementation of electronic health records in other countries. Unsurprisingly, a general trust in research and government agencies that process health data is a key factor.

[Opportunities and Challenges of Digitalization in Rehabilitation: Results of a Survey of Rehabilitation Facilities]. / Chancen und Herausforderungen der Digitalisierung bei der Rehabilitation ­ Ergebnisse einer Befragung von Rehabilitationseinrichtungen.

PURPOSE: The aim of this study was to measure the status of digitalization and the opportunities and challenges for rehabilitation facilities connected to telematics infrastructure. METHODS: A partially standardized online survey of all providers of rehabilitation facilities in Bavaria (n=33) was carried out. The questionnaire with 36 questions included a scale based on the Electronic Medical Record Adoption Model (EMRAM). RESULTS: The level of digitization was reported as level 0 in 70% of the rehabilitation facilities (level model to 7). The transmission of patient-related data (incoming and outgoing) is often analogue, whereas the processing within the facility is already predominantly digital in many cases. When connecting to the telematics infrastructure, installation, training of staff and adaptation of work organization required quite a bit of effort. CONCLUSION: Changes in the legal-financial situation in Germany open up new opportunities for increased digitalization of rehabilitation facilities. Hurdles are related to IT security requirements, staff training, and the low level of digitalization in hospitals, among doctors, and patients, which make digital data transmission difficult.

Design propositions for nudging in healthcare: Adoption of national electronic health record systems.

Objectives: Electronic health records (EHRs) are considered important for improving efficiency and reducing costs of a healthcare system. However, the adoption of EHR systems differs among countries and so does the way the decision to participate in EHRs is presented. Nudging is a concept that deals with influencing human behaviour within the research stream of behavioural economics. In this paper, we focus on the effects of the choice architecture on the decision for the adoption of national EHRs. Our study aims to link influences on human behaviour through nudging with the adoption of EHRs to investigate how choice architects can facilitate the adoption of national information systems. Methods: We employ a qualitative explorative research design, namely the case study method. Using theoretical sampling, we selected four cases (i.e., countries) for our study: Estonia, Austria, the Netherlands, and Germany. We collected and analyzed data from various primary and secondary sources: ethnographic observation, interviews, scientific papers, homepages, press releases, newspaper articles, technical specifications, publications from governmental bodies, and formal studies. Results: The findings from our European case studies show that designing for EHR adoption should encompass choice architecture elements (i.e., defaults), technical elements (i.e., choice granularity and access transparency), and institutional elements (i.e., regulations for data protection, information campaigns, and financial incentives) in combination. Conclusions: Our findings provide insights on the design of the adoption environments of large-scale, national EHR systems. Future research could estimate the magnitude of effects of the determinants.

Medical informatics labor market analysis using web crawling, web scraping, and text mining.

OBJECTIVES: The European University Association (EUA) defines "employability" as a major goal of higher education. Therefore, competence-based orientation is an important aspect of education. The representation of a standardized job profile in the field of medical informatics, which is based on the most common labor market requirements, is fundamental for identifying and conveying the learning goals corresponding to these competences. METHODS: To identify the most common requirements, we extracted 544 job advertisements from the German job portal, STEPSTONE. This process was conducted via a program we developed in R with the "rvest" library, utilizing web crawling, web extraction, and text mining. After removing duplicates and filtering for jobs that required a bachelor's degree, 147 job advertisements remained, from which we extracted qualification terms. We categorized the terms into six groups: professional expertise, soft skills, teamwork, processes, learning, and problem-solving abilities. RESULTS: The results showed that only 45% of the terms are related to professional expertise, while 55% are related to soft skills. Studies of employee soft skills have shown similar results. The most prevalent terms were programming, experience, project, and server. Our second major finding is the importance of experience, further underlining how essential practical skills are. CONCLUSIONS: Previous studies used surveys and narrative descriptions. This is the first study to use web crawling, web extraction, and text mining. Our research shows that soft skills and specialist knowledge carry equal weight. The insights gained from this study may be of assistance in developing curricula for medical informatics.

A Systematic Review and Meta-Analysis of Pharmacogenetic Studies in Patients with Chronic Kidney Disease.

Chronic kidney disease (CKD) is an important global public health problem due to its high prevalence and morbidity. Although the treatment of nephrology patients has changed considerably, ineffectiveness and side effects of medications represent a major issue. In an effort to elucidate the contribution of genetic variants located in several genes in the response to treatment of patients with CKD, we performed a systematic review and meta-analysis of all available pharmacogenetics studies. The association between genotype distribution and response to medication was examined using the dominant, recessive, and additive inheritance models. Subgroup analysis based on ethnicity was also performed. In total, 29 studies were included in the meta-analysis, which examined the association of 11 genes (16 polymorphisms) with the response to treatment regarding CKD. Among the 29 studies, 18 studies included patients with renal transplantation, 8 involved patients with nephrotic syndrome, and 3 studies included patients with lupus nephritis. The present meta-analysis provides strong evidence for the contribution of variants harbored in the ABCB1, IL-10, ITPA, MIF, and TNF genes that creates some genetic predisposition that reduces effectiveness or is associated with adverse events of medications used in CKD.

Discovery and expression analysis of novel transcripts of the human SR-related CTD-associated factor 1 (SCAF1) gene in human cancer cells using Next-Generation Sequencing.

The human SR-related CTD associated factor 1 (SCAF1) gene is a new member of the human SR (Ser/Arg-rich) superfamily of pre-mRNA splicing factors, which has been discovered and cloned by members of our lab. SCAF1 interacts with the CTD domain of the RNA polymerase II polypeptide A and is firmly involved in pre-mRNA splicing. Although it was found to be expressed widely in multiple human tissues, its mRNA levels vary a lot. The significant relation of SCAF1 with cancer has been confirmed by many studies, since SCAF1 mRNA transcript was found to be overexpressed in breast and ovarian tumors, confirming its significant prognostic value as a cancer biomarker in both these human malignancies. In this study, we describe the discovery and cloning of fifteen novel transcripts of the human SCAF1 gene (SCAF1 v.2 - v.16), using nested PCR and NGS technology. In detail, extensive bioinformatic analysis revealed that these novel SCAF1 splice variants comprise a total of nine novel alternative splicing events between the annotated exons of the gene, thus producing seven novel SCAF1 transcripts with open-reading frames, which are predicted to encode novel SCAF1 isoforms and eight novel SCAF1 transcripts with premature termination codons that are likely long non-coding RNAs. Additionally, a novel 3' UTR was discovered and cloned using nested 3' RACE and was validated with Sanger sequencing. In order to validate the NGS findings as well as to investigate the expression profile of each novel transcript, RT-PCR experiments were carried out with the use of variant-specific primers. Since SCAF1 is implicated in many human malignancies, qualifying as a potential biomarker, the quantification of the presented novel transcripts in human samples may have clinical applications in different types of cancer.

Spontaneous internal carotid artery dissection: an uncommon cause of recurrent postpartum headache.

Postpartum spontaneous cervicocephalic artery dissection is an uncommon, poorly understood condition following pregnancy. We report a case of a 32-year-old woman with no history of trauma, chiropractic manipulation, connective tissue disorder, or previous headache who developed a mild, unilateral headache 7 days after the uneventful delivery of her third child (no general or neuraxial anesthesia was delivered). Seven days latter she presented to our emergency department complaining of recurrent episodes of right-sided headache coupled with a transient episode of sensory deficits in her left lower limb. Brain magnetic resonance imaging disclosed small infarctions in the internal watershed distribution of right internal carotid artery (ICA). Carotid artery dissection was diagnosed using DSA and T1 FAT-SAT sequences for the depiction of intramural hematoma. The patient was placed under oral anticoagulation and remained asymptomatic during a follow-up period of 6 months. The present case report highlights that cervicocephalic artery dissection is a condition that should be looked for in women with persisting or remitting unilateral headache following childbirth.

DNA cytometric analysis of surgically treated squamous cell cancer of the uterine cervix, stage pT1b1-pT2b.

OBJECTIVE: To determine the utility of DNA content and DNA-related variables of proliferative activity regarding prognosis in cervical cancer. STUDY DESIGN: DNA image (ICM) andflow cytometry (FCM) were performed to determine the DNA index (DI), 5c-exceeding rate (5c-ER), S-phase fraction (SPF) and proliferation index (PI) in 163 patients with surgically staged pT1b1-pT2b squamous cell cancer of the uterine cervix and treated with primary radical hysterectomy. ICM was performed on imprint cytology, obtained from fresh tumor tissue, which was also used for FCM. Results were analyzed using the chi2 test and Cox regression analysis for risk of pelvic lymph node involvement, tumor recurrence and recurrence-free survival (RFS). RESULTS: ICM was performed on all 163 and FCM on 133 samples. One-third of the tumors showed DNA aneuploidy. Analysis demonstrated prognostic significance of a DI > or = 1.70, with a (70:30) 2.3-fold risk of recurrence (P=.024) and reduced RFS of 10 months (P=.003) in cases of DI > or = 1.70. A high 5c-ER > 11% was associated with pelvic lymph node involvement and decreased RFS (P < or = .04). Significantly more relapses were found in tumors with SPF > 12% (70.8% vs. 29.2%, P=.007). RFS was markedly reduced in tumors with high SPF (52.3 vs. 61.1 months, P=.011). Low proliferative tumors (PI<25%) were associated with lower stage (P=.036) and increased RFS (61.2 vs. 47.1 months, P=.028). In multivariate analysis of clinicopathologic variables (pT category, nodal status, lymphovascular space involvement) and DNA related variables, pelvic lymph node involvement was the only significant predictor of RFS. In patients with nodal involvement, tumors with DI >1.70 were associated with lessfavorable outcomes. CONCLUSION: DNA-related variables of cell cycle analysis were valuablefor predicting prognosis in cervical cancer patients. Tumors with DI>1.70, 5c-ER >11% and high proliferative activity (SPF>12%, PI>25%) represent a subgroup with a poor prognosis.

Familial cancer history in patients with carcinoma of the cervix uteri.

OBJECTIVES: Several cancers show the tendency to aggregate in families. But the contribution of heredity to the causation of sporadic malignancies, like cervical cancer is unclear. STUDY DESIGN: Seven hundred and thirty-seven women with operative treated cervical cancer (CX) were searched for familiar history of malignant tumours. Positive familial history was stated, if one first degree relative was affected by malignant tumour. The site of malignant tumour was stated and the mean age was compared. RESULTS: Twenty-two percent of the women had malignancies at different sites in first degree relatives. In about one-half the mother, in 30% the father and in 11% more than one first degree relative was affected. Overall, first degree relatives of 21 patients (13%) had malignancies of the lungs or the oro-pharynx. Thirty-seven women had malignant tumours of the lower genital tract and 11 had invasive cervical cancer. Mean age of patients with positive familial history was the same as those without (43 versus 42 years) it. But, women whose first degree female relatives had cervical cancer were significantly younger than those with extragenital malignancies (37 versus 45 years). The mean 5-year survival rate was higher in patients with a positive familial cancer history (85.6% versus 74.6%; P=1.7). CONCLUSIONS: The data suggest, that a small number of patients have a familial susceptibility for cervical cancer and probably for HPV-associated neoplasms. Further studies establishing the immune status and the search for genetic polymorphisms of these patients are required.