The Oregis Dashboard: Web-based Ophthalmic Research Benchmarking in Germany

Abstract

Introduction The oregis registry operated by the German Ophthalmological Society (DOG) serves as a central digital platform for collecting and analysing ophthalmological healthcare data in Germany. The aim of oregis is to provide a comprehensive picture of the current healthcare situation and promote healthcare research using real-world-data from inpatient and outpatient facilities. Since its launch in 2020, oregis has continuously expanded its database to enable scientific analyses on a wide range of topics. This paper presents the new dashboard feature allowing participating centres to compare their own patient data with aggregated data in real time while also covering privacy aspects of the system.

Materials and Methods The oregis steering committee opted to implement the oregis dashboard based on existing medical registries. First, forty-nine national and international registries were analysed to identify common features such as benchmarking functionality. This was followed by technical realisation and implementation.

Results Each centre connected to oregis has secure access to the oregis dashboard, which displays key indicators for patients, diagnoses, and treatments. Dynamic filtering options allow targeted data analysis, comparing each centreʼs results anonymously with aggregated data from other centres. The dashboard uses Apache Superset data visualisation software [! etwas informativer]. Data is synchronised using an integrated oregis Konnektor module to anonymise patient data according to defined standards. Extensive security and privacy measures ensure data security, including server-side encryption, transport encryption, and two-factor authentication. The dashboard is part of a comprehensive privacy policy developed and validated for oregis by privacy experts.

Conclusion The number of centres connected to oregis is still growing. The new web-based dashboard allows flexible analysis of data and comparison with other centres without allowing conclusions to be drawn about any individual care centre; this ensures data privacy and independence in each centre. More features can be added to provide a more thorough overview of eye care in Germany as oregis grows.

Keywords

Health services research - registries - benchmarking - real-world-data

Introduction

Operated by the German Ophthalmological Society (DOG), oregis serves as a central digital data registry for collecting and analysing eye care data in Germany. The main aim of oregis is to help keep track of the current eye care situation and improve ophthalmological healthcare research in Germany. Involving as many ophthalmological outpatient and inpatient care facilities as possible should help reach this goal by collecting and integrating real-world data on a daily basis from participating ophthalmological centres [1].

Th oregis registry has evolved rapidly since its launch in 2020 and currently collects data on more than 870,000 patients in thirteen care centres in Germany. The registry has records on more than 4.9 million intraocular pressure measurements and 4.7 million visual acuity assessments.

The number of participating centres is constantly growing, so the database is constantly expanding and increasing the significance of the data collected. The registry also allows real-world data from clinical practice to be used in addressing a variety of scientific research topics [2].

In contrast to existing registries, oregis is not based on a specific disease, but is designed as a cross-disease and open-hypothesis registry. This allows data to be collected and analysed on a wide range of ophthalmological conditions and care situations to create a broad information base for scientific research. Data privacy and voluntary data submission play an essential role in meeting legal requirements and ethical standards.

Data transfer from participating centres is automated using the Konnektor module installed into the centreʼs software for seamless integration into oregis. Manual data entry and transmission are supported in centres that do not yet keep digital records. This flexibility ensures broad participation and high data quality in the registry [1].

Each centre connected to oregis is authorised to evaluate data entered into the registry for scientific purposes. However, access to the data requires a formal application detailing the research issue to be covered. The oregis steering committee then sets up a review panel from members of the scientific advisory board. These members bring their expertise to bear from the various subspecialties of ophthalmology on behalf of sections of the DOG for a substantive and methodological evaluation of the application.

New technical opportunities are emerging for connecting different protagonists in the healthcare system in tandem with increasing digitalisation in medicine [3].

In addition to scientific research analysis, the oregis dashboard feature was designed to allow data-transmitting centres to compare their own patient data independently against the general situation reported by centres connected to oregis at any time. The dashboard provides a clear and accessible view of the data from and accessible to the respective ophthalmological centre, allowing evaluation in structured topics.

The present contribution aims to present the oregis dashboard function while also covering data privacy aspects in more detail.

Materials and Methods

Meetings held by the oregis steering committee led to a resolution to introduce the oregis dashboard based on existing medical registries. The first step would be to examine forty-nine national and international medical registries for common characteristics enabling data providers to access the data collected. The common characteristics identified included support for benchmarking and comparing the care situation in a participating centre with the broader population consisting of all the centres participating in the respective registry. The second step involved the oregis scientific advisory board defining the metrics to be used in the dashboard. This was followed by technical realisation and implementation.

Results: Dashboard Display

Every ophthalmology centre connected to oregis can independently access the oregis dashboard online after logging in using a username and password. The user interface focuses on displaying relevant key indicators under selection options for patients, contacts, diagnoses, treatments, and IVOM ([Fig. 1]) arranged in a menu bar above the evaluations. Selecting the patients menu item shows more detailed information on age and gender, insurance status, and number of patients over time. Medical consultation frequency is plotted over time by gender, age, and insurance type. The diagnoses, treatments, and IVOM menu options provide a comparison of diagnoses and treatment frequencies in the participating centre, including intravitreal medications administered.

Fig. 1 The oregis dashboard allows a ophthalmological practice participating in oregis to compare its own patient data collected during clinical routine against aggregated data from all the centres connected to oregis. This example shows the average age of patients and gender distribution at the centre itself (left part of the image) compared against the totals from all the other centres (right part of the image).

The dashboard also supports dynamic data consolidation using filter options. This allows the centre to view data on specific years and time periods alongside ICD codes under the contacts menu item, for example. Each centre can compare itself against the cumulative total of all the other centres with the centreʼs own evaluations on the left part and the aggregated data of the other centres on the right without it being possible to draw any conclusions on any of the other individual centres ([Fig. 1]).

Technical architecture ([Fig. 2])

Fig. 2 System architecture in the oregis dashboard.

The oregis dashboard runs on its own server for adequate decoupling and uses Apache Superset (Apache Software Foundation, Delaware, USA) for data visualisation. Users are authenticated using the central IdentityServer4 authentication system. OpenID-Connect was used as the standard for authentication. The oregis dashboard does not use its own database; instead, it accesses the central data warehouse. This performs pre-aggregations in a daily cron job for the dashboard to improve performance. Centre management systems need to have oregis Konnektor installed, a software solution ensuring connection to oregis. The Konnektor module anonymises the data according to set rules and transmits the data to the registry. The module transfers data in defined batches during fixed transfer windows using a REST API.

Security

The data only ever shows data encrypted server-side. The system also has transport encryption activated. Two-factor authentication is used on the user side. All oregis servers are located at a secure server farm in Germany; the server farm is certified according to ISO 27 001.

Data privacy

The web-based dashboard allows participating centres to access data in the registry. Keeping the interests of the centres protected has always been a main consideration, especially regarding protecting each centreʼs own data. This includes eliminating the possibility of one centre comparing its data directly against data from another centre, only against the whole population of centres participating in oregis. The dashboard itself is part of the overall data protection concept in oregis, which was developed with experts from the German technology and methods platform for networked medical research, TMF eV. Data privacy matters were described in the white paper accompanying the introduction of the registry. The TMF eV data privacy working group gave the data privacy concept a vote of approval after completion. A data privacy lawyer audited the concept, and data protection officers from fifteen centres also gave it the green light.

Continuous data automation

Each centre would need to be able to update and exchange indicators on a continuous basis.

Discussion

The German Ophthalmological Society (DOG) oregis registry collects neutral data from participating outpatient and inpatient ophthalmological care centres for an objective general view of Germanyʼs general ophthalmological care situation without offering conclusions or interpretations [1].

One of the oregis registryʼs particular features is that it automatically integrates data from the software used in participating centres. This minimises the effort required for manual data entry and ensures that all relevant patient data is recorded. However, oregis also supports manual data entry for centres to participate even if they have not fully digitalised their patient management systems.

The web-based oregis dashboard plays a central role in allowing centres connected to oregis to access the data they have collected in their own operations and compare their own daily care activities with aggregated data from all centres connected to the oregis registry. Dashboard design focused on user-friendliness and data privacy.

The newly developed dashboard provides access to ophthalmological data, providing a general view of the care situation in each individual participating centre. Navigation through the platform is straightforward and intuitive, supporting workflows in ophthalmological clinics and centres. The platform is web-based, giving clinicians and researchers at participating centres the flexibility to access the data flexibly at any time.

Comparing the centreʼs individual data entered into a registry with the general data population collected in the registry from all participating centres is a common feature in several medical registries [4], [5], [6]. The European Registry of Quality Outcomes for Cataract and Refractive Surgery (EUREQUO) is one such example of a registry that aims to improve treatment in refractive surgery. Apart from that, oregis and EUREQUO have a number of common features. Both systems are provided free of charge and are web-based. Integrated benchmarking allows each centre to track its own activity over time and compare the results with other centres. EUREQUO operates internationally, whereas oregis is currently limited to Germany. There are also differences in data entry – unlike oregis, EUREQUO entries can be selected in a standardised manner from a drop-down menu on the website. None of the fields listed allow independent text or numeric entries by the operator. Input is more standardised, increasing data quality. The oregis system, on the other hand, automatically transmits continuous real-world data from connected centres to the registry. The data is only entered manually where patient data is not managed digitally in the centres or no Konnektor module has been installed. Standardised data collection may be suitable for refractive surgery, but it is currently not feasible for oregis to collect real-world data for automatic transfer in a standardised form without additional intervention from the ophthalmological centre in Germany due to the heterogeneous landscape of patient management systems, some of which are not yet digitalised. Automated data transfer is more flexible in oregis, almost certainly leading to higher risk of error at the potential cost of data quality [7]. EUREQUO benchmarking includes demographic and case-mix variables. Similar to the oregis dashboard, each participating centre can display its own surgical outcomes on a web-based system and compare the results with aggregated data from all the other centres. The dashboard will only ever show aggregated data from the entire database or from the respective country. This serves to safeguard the interests of each individual centre. The data can be exported in Excel format [6].

This presents a significant difference from the American IRIS Registry (Intelligent Research in Sight Clinical Data), the worldʼs largest ophthalmological registry, in how each registry collects and organises the data [5]. IRIS is fully automated and only integrates digital data, whereas oregis supports both automated and manual data entry. This flexibility plays an especially important role as not all ophthalmological centres and clinics have fully digitalised systems.

The number of centres connected to oregis is growing continuously; currently, there are thirteen such centres connected to oregis.

The American Academy of Ophthalmology Registry, IRIS, collects a vast amount of ophthalmic data. As of July 2024, IRIS had collected, aggregated, and anonymised data on more than 669.7 million consultations and 78.9 million patients. Around 15,150 clinicians in 2,845 ophthalmological centres have registered to enter their data into the IRIS registry from electronic health records. The number of participating centres connected to oregis is still rather small by comparison, which limits the significance of the data. Like oregis, IRIS transfers the data automatically at night using the software installed in participating centres. IRIS has the capacity to integrate more than forty different electoral health record (EHR) systems using system integration software. Participating centres are sent a monthly summary of services provided for benchmarking. Like oregis, IRIS comes at no initial cost to the medical professionals at the centre. Manual data entry is not necessary, reducing the effort required at care centres to a minimum. In stark contrast to oregis, IRIS participation is encouraged through Medicare reimbursements.

The IRIS dashboard is web-based like that of oregis. Every centre can access it. Quality measures are clearly defined and can be tracked in real time for each individual centre and compared against other centres at national level [8].

Data privacy and security

Data security plays an extremely important role in patient and health registries, especially given the sensitivity of patient data, social acceptance, and the legal standards involved [9]. Both oregis and the oregis dashboard use secure encryption protocols for both stored data and transmission. This ensures data protection from unauthorised access in either demographic information or specific medical records. After extensive testing, oregis was granted a penetration certificate by Turingpoint, a consultancy founded by security experts with a focus on cyber security, in September 2024. The oregis registry passed the penetration test; no vulnerabilities were found.

Like the IRIS and Save Sight registries, oregis follows strict anonymisation and pseudonymisation protocols, keeping patient data isolated from personal identification data. This complies with the recommended security standards from the German Federal Office for Information Security (BSI), ensuring that patients cannot be identified from their data [1].

Apart from that, the role-based access authentication system restricts access to certain data types to make sure that only authorised personnel can access sensitive information. The oregis registry provides specific views for clinicians, administrators, and researchers to accommodate these different roles. This role-specific structure ensures that each user group only sees the information relevant to its members – clinicians can track treatment progress for a specific patient, while researchers can conduct larger-scale data analyses, for example.

This high standard of data protection may also serve as a model for other national and international registries with the increasing importance of data privacy for patients worldwide in the face of data theft and cybercrime.

Conclusion

The number of centres connected to oregis is growing continuously. The newly introduced web-based oregis dashboard enables intuitive and versatile analysis of data collected at an ophthalmological centre for comparison with aggregated data from all other participating centres while also providing the data collected for scientific research purposes. However, the system will not allow any conclusions on any individual care centre in compliance with the strict data protection requirements while respecting the autonomy of each care centre. The oregis dashboard is a flexible tool with the option to upgrade to new features as oregis grows towards improving accuracy in ascertaining general condition of ophthalmological care in Germany.

Conclusion

Already known:

• The oregis registry is a digital system operated by the German Ophthalmological Society (DOG) for neutral data collection without offering interpretation or conclusions or focusing on any particular condition.

• The registry aims to reflect the ophthalmic care situation in Germany more accurately by connecting as many centres as possible.

• Real-world data collected in oregis can also be used to address a variety of scientific research topics.

New:

• The number of centres connected to oregis is growing continuously.

• The new web-based dashboard provides a versatile method of analysing the data collected in oregis and comparing the data with aggregated data from all other participating centres without allowing any conclusions to be drawn about any individual centre.

Conflict of Interest

Sponsors: Bayer Vital GmbH, Biogen GmbH and Roche Pharma AG

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Publication History

Received: 31 October 2024

Accepted: 11 November 2024

Article published online:
04 February 2025