Your data is gold – Data donation for better healthcare?-Reference-Cited by-同舟云学术

Your data is gold – Data donation for better healthcare?

Published:2019-10-01 Issue:5-6 Volume:61 Page:219-229
ISSN:2196-7032
Container-title:it - Information Technology
language:en
Short-container-title:

Author:

Strotbaum Veronika¹^ORCID,Pobiruchin Monika²^ORCID,Schreiweis Björn³^ORCID,Wiesner Martin⁴^ORCID,Strahwald Brigitte⁵^ORCID

Affiliation:

1. ZTG Zentrum für Telematik und Telemedizin GmbH , Universitätsstr. 142 , Bochum , Germany

2. Heilbronn University , GECKO Institute for Medicine, Informatics and Economics , Max-Planck-Str. 39 , Heilbronn , Germany

3. Institute for Medical Informatics and Statistics , University Hospital Schleswig-Holstein and Kiel University , Arnold-Heller-Str. 3 , Kiel , Germany

4. Heilbronn University , Faculty of Computer Science , Max-Planck-Str. 39 , Heilbronn , Germany

5. Pettenkofer School of Public Health (PSPH) , Institute for Medical Informatics, Biometry and Epidemiology (IBE) , LMU Munich , Marchioninistr. 17 , Munich , Germany

Abstract

Abstract Today, medical data such as diagnoses, procedures, imaging reports and laboratory tests, are not only collected in context of primary research and clinical studies. In addition, citizens are tracking their daily steps, food intake, sport exercises, and disease symptoms via mobile phones and wearable devices. In this context, the topic of “data donation” is drawing increased attention in science, politics, ethics and practice. This paper provides insights into the status quo of personal data donation in Germany and from a global perspective. As this topic requires a consideration of several perspectives, potential benefits and related, multifaceted challenges for citizens, patients and researchers are discussed. This includes aspects such as data quality & accessibility, privacy and ethical considerations.

Publisher

Walter de Gruyter GmbH

Subject

General Computer Science

Link

https://www.degruyter.com/document/doi/10.1515/itit-2019-0024/pdf

Reference67 articles.

1. WHO. 2010. World Health Assembly Resolution 63.22 on Human Organ and Tissue Transplantation [Online: http://www.who.int/transplantation/en; Accessed: June 28, 2019].

2. David M. Shaw, Juliane V. Gross, and Thomas C. Erren. 2016. Data donation after death. EMBO reports, 17, 1, 14–17. DOI:10.15252/embr.201541802.

3. Weiqi Wang and Eswar Krishnan. 2014. Big Data and Clinicians: A Review on the State of the Science. JMIR Med Inform, 2, 1, e1. DOI:10.2196/medinform.2913.

4. Ziad Obermeyer and Ezekiel J. Emanuel. 2016. Predicting the Future – Big Data, Machine Learning, and Clinical Medicine. N Engl J Med, 375, 13, 1216–1219. DOI:10.1056/NEJMp1606181.

5. Jenny Krutzinna, Mariarosaria Taddeo, and Luciano Floridi. 2019. Enabling posthumous medical data donation: a plea for the ethical utilisation of personal health data. In The Ethics of Medical Data Donation. Springer, 163–180.

Cited by 18 articles. 订阅此论文施引文献订阅此论文施引文献，注册后可以免费订阅5篇论文的施引文献，订阅后可以查看论文全部施引文献

1. Willingness to Share Health Data via Electronic Health Records in Germany: The Impact of Trust and the Role of the Opt-Out Mechanism (Preprint);2024-08-23

2. Data donation: Using the gift relationship framework to address privacy and environmental issues of energy consumption data collection;Energy Research & Social Science;2024-08

3. Participation in Data Donation: Co-Creative, Collaborative, and Contributory Engagements with Athletes and their Intimate Data;Designing Interactive Systems Conference;2024-07

4. Sensitive Data Donation: A Feminist Reframing of Data Practices for Intimate Research Contexts;Designing Interactive Systems Conference;2024-07

5. “It’s Not What We Were Trying to Get At, but I Think Maybe It Should Be”: Learning How to Do Trauma-Informed Design with a Data Donation Platform for Online Dating Sexual Violence;Proceedings of the CHI Conference on Human Factors in Computing Systems;2024-05-11