Local Approval Processes in a Federated and Distributed Research Infrastructure - Lessons Learned from the AKTIN-Project.

The AKTIN-Emergency Department Registry is a federated and distributed health data network which uses a two-step process for local approval of received data queries and result transmission. For currently establishing distributed research infrastructures, we present our lessons learned from 5 years of established operations.

An evidence map of systematic reviews on models of outpatient care for patients with chronic heart diseases.

BACKGROUND: Chronic heart disease affects millions of people worldwide and the prevalence is increasing. By now, there is an extensive literature on outpatient care of people with chronic heart disease. We aimed to systematically identify and map models of outpatient care for people with chronic heart disease in terms of the interventions included and the outcomes measured and reported to determine areas in need of further research. METHODS: We created an evidence map of published systematic reviews. PubMed, Cochrane Library (Wiley), Web of Science, and Scopus were searched to identify all relevant articles from January 2000 to June 2021 published in English or German language. From each included systematic review, we abstracted search dates, number and type of included studies, objectives, populations, interventions, and outcomes. Models of care were categorised into six approaches: cardiac rehabilitation, chronic disease management, home-based care, outpatient clinic, telemedicine, and transitional care. Intervention categories were developed inductively. Outcomes were mapped onto the taxonomy developed by the COMET initiative. RESULTS: The systematic literature search identified 8043 potentially relevant publications on models of outpatient care for patients with chronic heart diseases. Finally, 47 systematic reviews met the inclusion criteria, covering 1206 primary studies (including double counting). We identified six different models of care and described which interventions were used and what outcomes were included to measure their effectiveness. Education-related and telemedicine interventions were described in more than 50% of the models of outpatient care. The most frequently used outcome domains were death and life impact. CONCLUSION: Evidence on outpatient care for people with chronic heart diseases is broad. However, comparability is limited due to differences in interventions and outcome measures. Outpatient care for people with coronary heart disease and atrial fibrillation is a less well-studied area compared to heart failure. Our evidence mapping demonstrates the need for a core outcome set and further studies to examine the effects of models of outpatient care or different interventions with adjusted outcome parameters. SYSTEMATIC REVIEW REGISTRATION: PROSPERO (CRD42020166330).

Establishing a Data Quality Baseline in the AKTIN Emergency Department Data Registry - A Secondary Use Perspective.

Secondary use of clinical data is an increasing application that is affected by the data quality (DQ) of its source systems. Techniques such as audits and risk-based monitoring for controlling DQ often rely on source data verification (SDV). SDV requires access to data generating systems. We present an approach to a targeted SDV based on manual input and synthetic data that is applicable in low resource settings with restricted system access. We deployed the protocol in the DQ management of the AKTIN Emergency Department Data Registry. Our targeted approach has shown to be feasible to form a DQ baseline that can be used for different DQ monitoring processes such as the identification of different error sources.

Healthcare professionals' perceptions of impacts of the Covid-19-pandemic on outpatient care in rural areas: a qualitative study.

BACKGROUND: Measures to manage the COVID-19 pandemic have led to impacts on healthcare systems and providers worldwide. Outpatient healthcare professionals (HCPs) provide the majority of patient care. Insight into their experiences during a pandemic is rare. Therefore, we explored how primary and secondary care HCPs in a rural area in Germany experienced their work during the pandemic and what health-related outcomes they perceived in their patients. In this context, we also examined the impact on access to and utilization of healthcare and working conditions. METHODS: We conducted a qualitative interview study with outpatient HCPs. We recruited by e-mail, telephone, professional networks and personal contacts. Data were collected between August 2020 and January 2021. All interviews were audio recorded, transcribed, and analysed using qualitative content analysis. RESULTS: Our sample consisted of 28 HCPs (15 family physicians, 7 cardiologists, and 6 non-physician assistants, 12 female) from Saxony-Anhalt, Germany. HCPs experienced fewer consultations as well as cancellations by hospitals and secondary care physicians, especially at the beginning of the Covid-19-pandemic, while they continued throughout to provide outpatient care. They quickly adopted changes in practice organisation and healthcare provision. There was a shift towards telephone consultations, home visits as well as unconventional consultations e.g. through the practice window. Family physicians used personal relationships to support utilization of healthcare and to avoid health-related effects. Social tension and burden seemed to interact with a perceived lack of preparedness, the pandemic-related changes in their working condition as well as access to and utilization of healthcare. Chronic disease monitoring was postponed, which could have consequences in the course of disease of patients. HCPs experienced effects on patients' psychological well-being. CONCLUSION: Our study demonstrates the impacts of Covid-19-pandemic on outpatient care in rural areas and emphasizes its importance. HCPs experienced impacts on access to and utilization of healthcare, working conditions and health-related outcomes. Health policy should create a framework for healthcare to support outpatient care in rural areas with a looming undersupply of primary and secondary care in order to maintain healthcare and reduce pandemic impacts.