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ArticleJMIR formative research2026

Fully Anonymized Digital Health Data Acquisition in a Research Partnership Using a Blinded Deidentification Proxy in the HerzFit App: Implementation Study.

Lara Marie Reimer, Leon Nissen, Fabian Starnecker, Olga Stepanova, Florent Dufour, Ruth Ney, Sinann Al Najem, Heribert Schunkert, Stephan M Jonas

Abstract readCase Reports
In one paragraph

Article in JMIR formative research, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

0numbers the graph read from it
0cells of the map it votes in
0citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

0 citing papers in PubMed.

No citing paper in PubMed yet.

4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

9 authors.

Lara Marie ReimerInstitute for Digital Medicine, University Hospital Bonn, University of Bonn, Bonn, North Rhine-Westphalia, Germany.ORCID 0000-0002-6546-8531
Leon NissenInstitute for Digital Medicine, University Hospital Bonn, University of Bonn, Bonn, North Rhine-Westphalia, Germany.ORCID 0009-0009-3884-0850
Fabian StarneckerDepartment of Cardiology, German Heart Centre Munich, University Hospital of the Technical University of Munich, Munich, Germany.ORCID 0000-0001-9850-4239
Olga StepanovaByteLaw Attorneys, Frankfurt am Main, Germany.ORCID 0009-0005-2130-7954
Florent DufourLeibniz Supercomputing Centre, Garching bei München, Germany.ORCID 0000-0001-6902-7314
Ruth NeyDeutsche Herzstiftung, Frankfurt am Main, Germany.ORCID 0009-0006-7390-845X
Sinann Al NajemDeutsche Herzstiftung, Frankfurt am Main, Germany.ORCID 0000-0003-4458-950X
Heribert SchunkertDepartment of Cardiology, German Heart Centre Munich, University Hospital of the Technical University of Munich, Munich, Germany.ORCID 0000-0001-6428-3001
Stephan M JonasInstitute for Digital Medicine, University Hospital Bonn, University of Bonn, Bonn, North Rhine-Westphalia, Germany.ORCID 0000-0002-3687-6165

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundThe European General Data Protection Regulation (GDPR) strictly regulates the processing of personal and health-related data, posing challenges for digital health research, especially when data are collected using participants' own devices. Although scientific data can theoretically be anonymized, standard internet communication protocols inevitably expose transmission metadata, preventing true anonymization. Existing solutions, including virtual private networks, reverse proxies, and trust centers, improve confidentiality but do not technically or legally enable fully anonymized data collection. Consequently, large-scale digital health research often requires extensive organizational measures, complex consent procedures, and high regulatory overhead.

objectiveThis study aimed to develop a GDPR-compliant concept for fully anonymized scientific data collection, ensuring that no entity has simultaneous access to identifying information and donated data. We also implemented and evaluated this concept in a real-world public-private partnership.

methodsWe designed a data donation architecture based on a blinded deidentification proxy that decouples identifying transmission metadata from encrypted user data at the time of donation. The concept combines symmetric (Advanced Encryption Standard-128 in Cipher Block Chaining) and asymmetric (Rivest-Shamir-Adleman with Optimal Asymmetric Encryption Padding) encryption, enabling end-to-end encrypted and anonymized data transfer without persistent identifiers. The system was integrated into the HerzFit app, a mobile lifestyle coach for cardiovascular disease prevention available in German-speaking countries, and evaluated for adoption, technical feasibility, and performance. Performance overhead was assessed using round-trip time benchmarks. Duplicate donations were identified and merged to estimate unique data donors.

resultsThe solution was integrated and tested in the HerzFit app with more than 200,000 downloads between April 2022 and December 2025. Since the introduction of the data donation feature, more than 13,000 donations have been received, translating to more than 9000 individual users contributing anonymized datasets. Proxy-based transmission resulted in an average round-trip time of 143 ms, compared to 58 ms for direct transfer, representing a modest overhead while maintaining usability. The operator of the donation database did not gain access to identifying information at any stage, demonstrating full technical anonymization. The approach can be operated reliably at scale with minimal server resources due to the stateless proxy design.

conclusionsThis work introduces a novel system architecture enabling fully anonymized, GDPR-compliant data donation directly from participants' devices. By decoupling identifying metadata from encrypted health data, the concept minimizes regulatory effort, strengthens privacy protection, and provides a practical framework for large-scale digital health research in research partnerships, for example, between a private company and a research institution. The real-world deployment in HerzFit demonstrates the feasibility, scalability, and scientific utility of this approach. The concept is broadly transferable to other mobile health apps and has the potential to substantially expand ethically and legally compliant data acquisition.

Indexed as

Computer SecurityConfidentialityData AnonymizationData CollectionMobile ApplicationsDigital HealthHumanscardiovascular diseasedata anonymizationdigital healthGDPRmHealthprimary prevention

Identifiers

PMID42097603
PMCPMC13195370

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LicenceCC BY
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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.