scholarly journals Patient Perspectives on Sharing Anonymized Personal Health Data Using a Digital System for Dynamic Consent and Research Feedback: A Qualitative Study

2016 ◽  
Vol 18 (4) ◽  
pp. e66 ◽  
Author(s):  
Karen Spencer ◽  
Caroline Sanders ◽  
Edgar A Whitley ◽  
David Lund ◽  
Jane Kaye ◽  
...  
Keyword(s):  
Qualitative Study ◽  
Health Data ◽  
Digital System ◽  
Patient Perspectives ◽  
Personal Health ◽  
Dynamic Consent

(Preprint)

2018 ◽  
Author(s):  
Ram Dixit ◽  
Sahiti Myneni
Keyword(s):  
Cancer Survivors ◽  
Mental Models ◽  
Health Systems ◽  
Information Needs ◽  
Health Data ◽  
Information Architecture ◽  
Personal Health ◽  
User Centered Design ◽  
Card Sort ◽  
Connected Health

BACKGROUND Connected Health technologies are a promising solution for chronic disease management. However, the scope of connected health systems makes it difficult to employ user-centered design in their development, and poorly designed systems can compound the challenges of information management in chronic care. The Digilego Framework addresses this problem with informatics methods that complement quantitative and qualitative methods in system design, development, and architecture. OBJECTIVE To determine the accuracy and validity of the Digilego information architecture of personal health data in meeting cancer survivors’ information needs. METHODS We conducted a card sort study with 9 cancer survivors (patients and caregivers) to analyze correspondence between the Digilego information architecture and cancer survivors’ mental models. We also analyzed participants’ card sort groups qualitatively to understand their conceptual relations. RESULTS We observed significant correlation between the Digilego information architecture and cancer survivors’ mental models of personal health data. Heuristic analysis of groups also indicated informative discordances and the need for patient-centric categories relating health tracking and social support in the information architecture. CONCLUSIONS Our pilot study shows that the Digilego Framework can capture cancer survivors’ information needs accurately; we also recognize the need for larger studies to conclusively validate Digilego information architectures. More broadly, our results highlight the importance of complementing traditional user-centered design methods and innovative informatics methods to create patient-centered connected health systems.

scholarly journals DynamiChain: Development of Medical Blockchain Ecosystem Based on Dynamic Consent System

2021 ◽  
Vol 11 (4) ◽  
pp. 1612
Author(s):  
Tong Min Kim ◽  
Seo-Joon Lee ◽  
Dong-Jin Chang ◽  
Jawook Koo ◽  
Taenam Kim ◽  
...  
Keyword(s):  
Industrial Revolution ◽  
Health Management ◽  
Personal Health Information ◽  
Healthcare Sector ◽  
Personal Health ◽  
Health Examination ◽  
Fourth Industrial Revolution ◽  
Management Algorithm ◽  
Dynamic Consent ◽  
Privacy Issues

Although blockchain is acknowledged as one of the most important technologies to lead the fourth industrial revolution, major technical challenges regarding security breach and privacy issues remain. This issue is particularly sensitive in applied medical fields where personal health information is handled within the network. In addition, contemporary blockchain-converged solutions do not consider restricted medical data regulations that are still obstacles in many countries worldwide. This implies a crucial need for a system or solution that is suitable for the healthcare sector. Therefore, this article proposes the development of a dynamic consent medical blockchain system called DynamiChain, based on a ruleset management algorithm for handling health examination data. Moreover, medical blockchain-related studies were systematically reviewed to prove the novelty of DynamiChain. The proposed system was implemented in a scenario where the exercise management healthcare company provided health management services based on data obtained from the data provider’s hospital. The proposed research is envisioned to provide a widely compatible blockchain medical system that could be applied in future healthcare fields.

Patient perspectives on information and choice in cancer screening: A qualitative study in the UK

2007 ◽  
Vol 65 (5) ◽  
pp. 890-899 ◽  
Author(s):  
Ruth Gillian Jepson ◽  
Jenny Hewison ◽  
Andrew Thompson ◽  
David Weller
Keyword(s):  
Cancer Screening ◽  
Qualitative Study ◽  
Patient Perspectives ◽  
The Uk

scholarly journals The funhouse mirror: the I in personalised healthcare

2021 ◽  
Vol 17 (1) ◽  
Author(s):  
Mira W. Vegter ◽  
Hub A. E. Zwart ◽  
Alain J. van Gool
Keyword(s):  
Precision Medicine ◽  
Personal Data ◽  
Health Data ◽  
Personal Health ◽  
Lifestyle Interventions ◽  
Phenotypic Data ◽  
Individual Health ◽  
Data Source ◽  
Tracking Devices ◽  
Personalised Healthcare

AbstractPrecision Medicine is driven by the idea that the rapidly increasing range of relatively cheap and efficient self-tracking devices make it feasible to collect multiple kinds of phenotypic data. Advocates of N = 1 research emphasize the countless opportunities personal data provide for optimizing individual health. At the same time, using biomarker data for lifestyle interventions has shown to entail complex challenges. In this paper, we argue that researchers in the field of precision medicine need to address the performative dimension of collecting data. We propose the fun-house mirror as a metaphor for the use of personal health data; each health data source yields a particular type of image that can be regarded as a ‘data mirror’ that is by definition specific and skewed. This requires competence on the part of individuals to adequately interpret the images thus provided.

scholarly journals Public Interest, Health Research and Data Protection Law: Establishing a Legitimate Trade-Off between Individual Control and Research Access to Health Data

Laws ◽  
2020 ◽  
Vol 9 (1) ◽  
pp. 6 ◽  
Author(s):  
Mark J. Taylor ◽  
Tess Whitton
Keyword(s):  
Public Interest ◽  
Data Protection ◽  
Health Research ◽  
Health Data ◽  
Personal Health ◽  
Positive Contribution ◽  
Data Governance ◽  
The Public ◽  
Individual Control ◽  
Data Protection Law

The United Kingdom’s Data Protection Act 2018 introduces a new public interest test applicable to the research processing of personal health data. The need for interpretation and application of this new safeguard creates a further opportunity to craft a health data governance landscape deserving of public trust and confidence. At the minimum, to constitute a positive contribution, the new test must be capable of distinguishing between instances of health research that are in the public interest, from those that are not, in a meaningful, predictable and reproducible manner. In this article, we derive from the literature on theories of public interest a concept of public interest capable of supporting such a test. Its application can defend the position under data protection law that allows a legal route through to processing personal health data for research purposes that does not require individual consent. However, its adoption would also entail that the public interest test in the 2018 Act could only be met if all practicable steps are taken to maximise preservation of individual control over the use of personal health data for research purposes. This would require that consent is sought where practicable and objection respected in almost all circumstances. Importantly, we suggest that an advantage of relying upon this concept of the public interest, to ground the test introduced by the 2018 Act, is that it may work to promote the social legitimacy of data protection legislation and the research processing that it authorises without individual consent (and occasionally in the face of explicit objection).

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