Enabling data sovereignty for patients through digital consent enforcement

Appenzeller, Arno; Rode, Ewald; Krempel, Erik; Beyerer, Jürgen

doi:10.1145/3389189.3393745

Cited by 8 publications

(5 citation statements)

References 6 publications

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“…This weakens the impact of the digital consent and can also be a very time-consuming process especially with fine granular consent choices. There are also several related studies, including our own, that describe such mechanisms [22,23].…”

mentioning

confidence: 89%

Sovereign Digital Consent through Privacy Impact Quantification and Dynamic Consent

et al. 2022

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Digitization is becoming more and more important in the medical sector. Through electronic health records and the growing amount of digital data of patients available, big data research finds an increasing amount of use cases. The rising amount of data and the imposing privacy risks can be overwhelming for patients, so they can have the feeling of being out of control of their data. Several previous studies on digital consent have tried to solve this problem and empower the patient. However, there are no complete solution for the arising questions yet. This paper presents the concept of Sovereign Digital Consent by the combination of a consent privacy impact quantification and a technology for proactive sovereign consent. The privacy impact quantification supports the patient to comprehend the potential risk when sharing the data and considers the personal preferences regarding acceptance for a research project. The proactive dynamic consent implementation provides an implementation for fine granular digital consent, using medical data categorization terminology. This gives patients the ability to control their consent decisions dynamically and is research friendly through the automatic enforcement of the patients’ consent decision. Both technologies are evaluated and implemented in a prototypical application. With the combination of those technologies, a promising step towards patient empowerment through Sovereign Digital Consent can be made.

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confidence: 89%

Sovereign Digital Consent through Privacy Impact Quantification and Dynamic Consent

et al. 2022

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“…As a practical example, visitors of Healthline.com seeking medical advice can only choose between allowing and disallowing all purposes at the same time. In the latter case, they are redirected to the ad-free and tracking-free portion of the website, 4 which offers nearly no functionality. Users can thus either decide to give in and allow all purposes so they can access the content or consult other websites instead.…”

Section: Problem 2: Coerced Consentsmentioning

confidence: 99%

“…Unfortunately, this recommendation was only implemented by a small number of websites and became obsolete in 2018. Another proposal suggested combining requests for consent with classical methods of access control, for which Appenzeller et al [4] suggested using the eXtensible Access Control Markup Language (XACML) [31]. A wide range of different ontologies exist for requesting consent and representing processing with no set standard, which Rantos et al [37] consolidated automatically using machine learning algorithms.…”

Section: Consent Representation Formatsmentioning

confidence: 99%

“…Additional tables in the database encapsulate the data and only grant access when data is demanded (a) by the specified recipients and (b) with the associated processing purpose. Such policies representing the users' preferences do not necessarily have to be integrated into the database; for example, Appenzeller et al [4] used XACML policies at a higher abstraction level to represent the users' consent and regulate the data that is forwarded to the services.…”

Section: Data Forwardingmentioning

confidence: 99%

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Generic Consents in Digital Ecosystems: Legal, Psychological, and Technical Perspectives

Steffes

Salemi²,

Feth

et al. 2023

Human Factors in Privacy Research

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Consent is an important authorization basis for the processing of personal data. According to the General Data Protection Regulation (GDPR), consents must be as specific and unambiguous as possible. In practice, however, this leads to users being overwhelmed by the large number of consent requests, which can ultimately be detrimental to freedom of choice. What the overwhelming number of requests for consent can lead to is reflected by the so-called cookie fatigue problem: users have become accustomed to accepting cookies on websites only to get rid of cookie banners as quickly as possible. As cookies do not always lead to the collection of personal data, the cookie fatigue problem cannot be transferred entirely to the problem we would like to address in this chapter. It only serves as an example for the consequences of overloading a data subject with requests for consent. As the GDPR demands that consent be informed and given freely, the current strategy of consent handling cannot be in the spirit of the data protection legislation. In this chapter, we present our vision of how consent can be integrated in the context of digital ecosystems from three perspectives: (1) achieving legal compliance according to data protection law, (2) demonstrating technical feasibility, and (3) assuring user-friendliness by adding cognition to the equation. Our approach aims to enable “generic consents” within a clearly defined scope and context. Although generic consents that serve as a “catch-all” are generally not allowed, we leverage the specific characteristics of digital ecosystems to impose limitations that can justify their use in this particular context. We will also detail the legal implications and present implementation options.

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“…With such a consent management, a patient can decide which data is allowed to be shared and under which conditions. In addition, she can control with whom this data is shared [2]. Such an automatic consent management system is also an advantage for the cancer registries as no manual consent evaluation is needed.…”

Section: B Architecture For Patient Involvementmentioning

confidence: 99%

Towards Distributed Healthcare Systems – Virtual Data Pooling Between Cancer Registries as Backbone of Care and Research

Appenzeller

Bartholomäus

Breitschwerdt

et al. 2021

2021 IEEE/ACS 18th International Conference on Computer Systems and Applications (AICCSA)

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Cancer registries offer a systematic approach for the collection, storage, and management of data on persons with cancer and related diseases. Much hope in research and healthcare in general is depending on such register-based analyses in order to comprehensively consider the features of a highly diverse population. Next to the data collection the cancer registries are responsible for data protection. To fulfill legal regulations, access to data has to be controlled in a strict way leading to sometimes bureaucratic and slow processes. The situation is especially complicated in Germany, since cancer data is distributed over numerous federal cancer registries. A research team has to negotiate a separate contract with each cancer registry, if a nationwide data evaluation has to be performed.In a joint effort of cancer registries, technical, medical, and economical experts we propose a different solution for cooperative data processing. Our approach aims for combining data in a virtual pool based on the selection criteria of individual requests from researchers. To achieve our goal, we adapt the Fraunhofer Medical Data Space as enabling technology. The architecture we propose will allow us to pool data of multiple partners regulated by data access policies. In doing so, each of the data sources can introduce its own rules and specifications on how data is used. Additionally, we add a digital consent management that will allow individual patients to decide how their data is used. Finally, we show the high potential of the cooperative analysis of distributed cancer data supported by the proposed solution in our approach.

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Enabling data sovereignty for patients through digital consent enforcement

Cited by 8 publications

References 6 publications

Sovereign Digital Consent through Privacy Impact Quantification and Dynamic Consent

Sovereign Digital Consent through Privacy Impact Quantification and Dynamic Consent

Generic Consents in Digital Ecosystems: Legal, Psychological, and Technical Perspectives

Towards Distributed Healthcare Systems – Virtual Data Pooling Between Cancer Registries as Backbone of Care and Research

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