Implementation of Privacy and Security for a Genomic Information System Based on Standards

Llorente, Silvia; Delgado, Jaime

doi:10.3390/jpm12060915

Cited by 5 publications

(10 citation statements)

References 10 publications

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“…The architecture of the developed platform is an evolution of our original Multimedia Information Protection And Management System, MIPAMS [1], [4] and also of the Genomic Information Protection And Management System, GIPAMS [3]. As it now deals with health information, we have called it Health Information Protection And Management System, HIPAMS.…”

Section: Methods -Hipams Descriptionmentioning

confidence: 99%

“…Figure 1 depicts its structure. Most of the modules were already described in [3], so we only describe the functionality of the new modules and those that have been extended (in alphabetical order):…”

Section: Methods -Hipams Descriptionmentioning

confidence: 99%

“…The first step to achieve dynamic consents is to decide the best way of representing the information. Our proposal is to define them as policies and rules for two reasons: 1) there are already expertise and tools available on that, including for example previous work on GIPAMS [3], and 2) authorization mechanisms for policies and rules are in place. Then, dynamic consents could be implemented by creating a new rule (or a policy) with the modified conditions approved by the patient (e.g.…”

Section: Dynamic Consents Policies and Authorizationmentioning

confidence: 99%

“…In this paper, we propose the use of a modular platform, Health Information And Management System (HIPAMS), derived from MIPAMS ("M" for Multimedia) [1] and GIPAMS ("G" for Genomic) [2], [3], to provide support for managing and storing provenance information and also to manage dynamic consents.…”

Section: Introductionmentioning

confidence: 99%

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Provenance and Dynamic Consents for the Management of Medical Data

Delgado

Llorente

2022

Studies in Health Technology and Informatics

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Medical data describe patient health information, both in healthy and disease conditions. In any case, health institutions need to ask for patient consent in order to provide their services. Patients usually give consent on a one-time basis, for a specific usage. Afterwards, if medical data usage is research, original patient consent does not apply and further consents should be required. On the other hand, provenance of medical data to verify the origin of health procedures is desirable, as digital health is increasing. We propose HIPAMS modular architecture to provide both provenance and dynamic consents for medical data as described in this paper.

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Section: Methods -Hipams Descriptionmentioning

confidence: 99%

Section: Methods -Hipams Descriptionmentioning

confidence: 99%

Section: Dynamic Consents Policies and Authorizationmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Provenance and Dynamic Consents for the Management of Medical Data

Delgado

Llorente

2022

Studies in Health Technology and Informatics

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“…We have already defined similar architectures for multimedia information (MIPAMS 4 ), and for genomic information (GIPAMS 2 3 ). Based on the experience achieved when designing and developing them, we propose xIPAMS as an abstraction of the architecture, clearly defining common modules and trying to minimize the specific ones, which are left for the content-specific architectures.…”

Section: Methodsmentioning

confidence: 99%

FAIR Aspects of a Health Information Protection and Management System

Delgado

Llorente

2022

Methods Inf Med

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Background Privacy management is a key issue when dealing with storage and distribution of health information. However, FAIR (Findability, Accessibility, Interoperability, and Reusability) principles when sharing information are in increasing demand in several organizations, especially for information generated in public-funded research projects. Objectives The two main objectives of the presented work are the definition of a secure and interoperable modular architecture to manage different kinds of medical content (xIPAMS [x, for Any kind of content, Information Protection And Management System] and HIPAMS [Health Information Protection And Management System]), and the application of FAIR principles to that architecture in such a way that privacy and security are compatible with FAIR. Methods We propose the concept of xIPAMS as a modular architecture, following standards for interoperability, which defines mechanisms for privacy, protection, storage, search, and access to health-related information. Results xIPAMS provides FAIR principles and preserves patient's privacy. For each module, we identify how FAIR principles apply. Conclusions We have analyzed how xIPAMS, and in particular HIPAMS (Health content), support the FAIR principles focusing on security and privacy. We have identified the FAIR principles supported by the different xIPAMS modules, concluding that the four principles are supported. Our analysis has also considered a possible implementation based on the concept of DACS (Document Access and Communication System), a system storing medical documents in a private and secure way. In addition, we have analyzed security aspects of the FAIRification process and how they are provided by xIPAMS modules.

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Blockchain for building trust in genomic initiatives

Zahid,

Sharma,

Ahmed

2024

World Med & Health Policy

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This commentary aims to share the current patient engagement context in genome initiatives within universal healthcare systems worldwide, focusing on the inclusivity of diverse population segments rather than just numerical metrics. It explores the relevance and potential replicability of these initiatives globally, questioning their efficacy in ensuring widespread citizen participation. Empirical evidence shows that hesitancy to opt into genome initiatives goes beyond demographic factors, with a significant portion of the population abstaining due to prevailing mistrust. Given the global aspiration for delivering precision healthcare and promoting a healthy lifestyle for all citizens, this paper investigates the multifaceted reasons behind this distrust. It underscores the need for policymakers to understand these reasons comprehensively and proposes a Blockchain‐based framework centered on trust‐building as a potential solution to enhance citizen engagement. The analysis of distrust factors and their impact on participation leads to the conclusion that decisive measures are necessary to improve the participatory landscape of genomic initiatives. The paper advocates for actions to enhance trust, thereby improving the current operational milieu of precision healthcare. The broader conclusion emphasizes the importance of trust‐building strategies in achieving the goal of fostering a healthy lifestyle for all citizens and provides a foundation for further development in this pioneering healthcare domain.

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Implementation of Privacy and Security for a Genomic Information System Based on Standards

Cited by 5 publications

References 10 publications

Provenance and Dynamic Consents for the Management of Medical Data

Provenance and Dynamic Consents for the Management of Medical Data

FAIR Aspects of a Health Information Protection and Management System

Blockchain for building trust in genomic initiatives

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