scholarly journals Designing and piloting a generic research architecture and workflows to unlock German primary care data for secondary use

2020 ◽  
Vol 18 (1) ◽  
Author(s):  
Thomas Bahls ◽  
Johannes Pung ◽  
Stephanie Heinemann ◽  
Johannes Hauswaldt ◽  
Iris Demmer ◽  
...  
Keyword(s):  
Primary Care ◽  
Data Integration ◽  
Record Linkage ◽  
Patient Reported Outcomes ◽  
Medical Data ◽  
Third Party ◽  
Family Doctors ◽  
Analysis Phase ◽  
Patient Reported ◽  
Research Architecture

Abstract Background Medical data from family doctors are of great importance to health care researchers but seem to be locked in German practices and, thus, are underused in research. The RADAR project (Routine Anonymized Data for Advanced Health Services Research) aims at designing, implementing and piloting a generic research architecture, technical software solutions as well as procedures and workflows to unlock data from family doctor’s practices. A long-term medical data repository for research taking legal requirements into account is established. Thereby, RADAR helps closing the gap between the European countries and to contribute data from primary care in Germany. Methods The RADAR project comprises three phases: (1) analysis phase, (2) design phase, and (3) pilot. First, interdisciplinary workshops were held to list prerequisites and requirements. Second, an architecture diagram with building blocks and functions, and an ordered list of process steps (workflow) for data capture and storage were designed. Third, technical components and workflows were piloted. The pilot was extended by a data integration workflow using patient-reported outcomes (paper-based questionnaires). Results The analysis phase resulted in listing 17 essential prerequisites and guiding requirements for data management compliant with the General Data Protection Regulation (GDPR). Based on this list existing approaches to fulfil the RADAR tasks were evaluated—for example, re-using BDT interface for data exchange and Trusted Third Party-approach for consent management and record linkage. Consented data sets of 100 patients were successfully exported, separated into person-identifying and medical data, pseudonymised and saved. Record linkage and data integration workflows for patient-reported outcomes in the RADAR research database were successfully piloted for 63 responders. Conclusion The RADAR project successfully developed a generic architecture together with a technical framework of tools, interfaces, and workflows for a complete infrastructure for practicable and secure processing of patient data from family doctors. All technical components and workflows can be reused for further research projects. Additionally, a Trusted Third Party-approach can be used as core element to implement data privacy protection in such heterogeneous family doctor’s settings. Optimisations identified comprise a fully-electronic consent recording using tablet computers, which is part of the project’s extension phase.

scholarly journals Federated Trusted Third Party as an Approach for Privacy Preserving Record Linkage in a Large Network of University Medicines in Pandemic Research

2021 ◽  
Author(s):  
Christopher Hampf ◽  
Martin Bialke ◽  
Hauke Hund ◽  
Christian Fegeler ◽  
Stefan Lang ◽  
...  
Keyword(s):  
Data Integration ◽  
Record Linkage ◽  
Privacy Preserving ◽  
Medical Data ◽  
Third Party ◽  
Bloom Filters ◽  
Large Network ◽  
Trusted Third Party ◽  
University Medicine ◽  
Expansion Stage

Abstract BackgroundThe Federal Ministry of Research and Education funded the Network of University Medicine for establishing an infrastructure for pandemic research. This includes the development of a COVID-19 Data Exchange Platform (CODEX) that provides standardised and harmonised data sets for COVID-19 research. Nearly all university hospitals in Germany are part of the project and transmit medical data from the local data integration centres to the CODEX platform. The medical data on a person that has been collected at several sites is to be made available on the CODEX platform in a merged form. To enable this, a federated trusted third party (fTTP) will be established, which will allow the pseudonymised merging of the medical data. The fTTP implements privacy preserving record linkage based on Bloom filters and assigns pseudonyms to enable re-pseudonymisation during data transfer to the CODEX platform.ResultsThe fTTP was implemented conceptually and technically. For this purpose, the processes that are necessary for data delivery were modelled. The resulting communication relationships were identified and corresponding interfaces were specified. These were developed according to the specifications in FHIR and validated with the help of external partners. Existing tools such as the identity management system E-PIX® were further developed accordingly so that sites can generate Bloom filters based on person identifying information. An extension for the comparison of Bloom filters was implemented for the federated trust third party. The correct implementation was shown in the form of a demonstrator and the connection of two data integration centres.ConclusionsThis article describes how the fTTP was modelled and implemented. In a first expansion stage, the fTTP was exemplarily connected through two sites and its functionality was demonstrated. Further expansion stages, which are already planned, have been technically specified and will be implemented in the future in order to also handle cases in which the privacy preserving record linkage achieves ambiguous results. The first expansion stage of the fTTP is available in the University Medicine network and will be connected by all participating sites in the ongoing test phase.

scholarly journals Quality of life and mental health in breast cancer survivors compared with non-cancer controls: a study of patient-reported outcomes in the United Kingdom

2020 ◽  
Author(s):  
Helena Carreira ◽  
Rachael Williams ◽  
Harley Dempsey ◽  
Susannah Stanway ◽  
Liam Smeeth ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Quality Of Life ◽  
Primary Care ◽  
Cancer Survivors ◽  
Patient Reported Outcomes ◽  
Breast Cancer Survivors ◽  
Patient Reported ◽  
History Of ◽  
History Of Cancer

Abstract Purpose There is limited high-quality evidence on quality of life, anxiety, and depressive symptoms in breast cancer survivors and women with no history of cancer. We aimed to address this by comparing patient-reported outcomes between breast cancer survivors and women with no history of breast cancer. Methods Breast cancer survivors and women with no prior cancer were selected from the UK Clinical Practice Research Datalink GOLD primary care database, which includes population-based primary care electronic health record data. Breast cancer survivors and controls were frequency matched by age and primary care practice. Outcomes were assessed with validated instruments via postal questionnaire. Linear and logistic regression models were fitted to estimate adjusted associations between breast cancer survivorship and outcomes. Results A total of 356 breast cancer survivors (8.1 years post diagnosis) and 252 women with no prior cancer participated in the study. Compared with non-cancer controls, breast cancer survivors had poorer QoL in the domains of cognitive problems (adjusted β (aβ) = 1.4, p = 0.01), sexual function (aβ = 1.7, p = 0.02) and fatigue (aβ = 1.3, p = 0.01), but no difference in negative feelings, positive feelings, pain, or social avoidance. Breast cancer survivors had higher odds of borderline-probable anxiety (score ≥ 8) (adjusted OR = 1.47, 95%CI:1.15–1.87), but no differences in depression. Advanced stage at diagnosis and chemotherapy treatment were associated with poorer QoL. Conclusions Compared with women with no history of cancer, breast cancer survivors report more problems with cognition, sexual function, fatigue, and anxiety, particularly where their cancer was advanced and/or treated with chemotherapy. Implications for Cancer Survivors Breast cancer survivors with more advanced disease and/or treated with chemotherapy should be closely monitored and, when possible, offered evidence-based intervention for fatigue, cognitive dysfunction, and sexual problems.

Primary care physician’s (PCP) perceived value of patient-reported outcomes (PROs) in clinical practice: a mixed methods study

2021 ◽  
pp. bmjqs-2020-012206
Author(s):  
Danny Mou ◽  
Daniel M Horn ◽  
Marilyn Heng ◽  
Manuel Castillo-Angeles ◽  
Keren Ladin ◽  
...  
Keyword(s):  
Primary Care ◽  
Clinical Practice ◽  
Mixed Methods ◽  
Clinical Setting ◽  
Patient Reported Outcomes ◽  
Mixed Methods Study ◽  
Clinic Efficiency ◽  
Wide Range ◽  
Patient Reported ◽  
Semistructured Interviews

BackgroundPatient-reported outcomes (PROs) can promote patient engagement, shared-decision making and improve the overall experience of care. However, PRO integration in the primary care clinical setting is limited. Exploring the perspectives of primary care physicians (PCPs) on PROs is key to understanding how they are being used in the clinical setting. We sought to elucidate this clinical perspective at one of the largest US health systems that has integrated a wide range of PROs into routine primary care.MethodsMixed methods study with both anonymous online surveys and in-person qualitative semistructured interviews conducted with PCPs to understand their clinical perspectives on the applications of the existing PROs. PCPs from the 19 affiliated clinics were prompted to complete the survey. Interviewed PCPs were selected via a combination of random and purposive selection from the PCP directory.ResultsOf 172 PCPs, 117 (68%) completed the online survey and 28 completed semistructured interviews. Most PCPs (77%) reviewed PRO responses with their patients. PCPs endorsed that PROs improve clinic efficiency and clinical management. However, PCPs have heterogeneous perspectives on the relevance of PROs in clinical practice, likely due to variations in clinic practice. For specific PRO instruments, PCPs reported anxiety and depression screening PROs to be most helpful. PCPs felt that PROs assisted with completing screening questions that are required by regulatory bodies. Barriers to using PROs include poor user-interface for both clinicians and patients and inadequate training.ConclusionsMost PCPs regularly use PRO data though there are mixed opinions about their clinical relevance. An adaptable, user-friendly PRO system has the potential to have meaningful clinical applications in primary care.

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