scholarly journals Sharing Is Caring – Data Sharing Initiatives in Healthcare

2020 ◽  
Author(s):  
Tim Hulsen
Keyword(s):  
Precision Medicine ◽  
Data Sharing ◽  
Citation Rate ◽  
Wearable Devices ◽  
Health Data ◽  
Future Developments ◽  
Academic Hospitals ◽  
Data Ownership ◽  
Professional Health ◽  
Valley Of Death

In recent years, more and more health data are being generated. These data come not only from professional health systems, but also from wearable devices. All these data combined form ‘big data’ that can be utilized to optimize treatments for each unique patient (‘precision medicine’). To achieve this precision medicine, it is necessary that hospitals, academia and industry work together to bridge the ‘valley of death’ of translational medicine. However, hospitals and academia often have problems with sharing their data, even though the patient is actually the owner of his/her own health data, and the sharing of data is associated with increased citation rate. Academic hospitals usually invest a lot of time in setting up clinical trials and collecting data, and want to be the first ones to publish papers on this data. The idea that society benefits the most if the patient’s data are shared as soon as possible so that other researchers can work with it, has not taken root yet. There are some publicly available datasets, but these are usually only shared after studies are finished and/or publications have been written based on the data, which means a severe delay of months or even years before others can use the data for analysis. One solution is to incentivize the hospitals to share their data with (other) academic institutes and the industry. Here we discuss several aspects of data sharing in the medical domain: publisher requirements, data ownership, support for data sharing, data sharing initiatives and how the use of federated data might be a solution. We also discuss some potential future developments around data sharing.

scholarly journals Sharing Is Caring—Data Sharing Initiatives in Healthcare

2020 ◽  
Vol 17 (9) ◽  
pp. 3046
Author(s):  
Tim Hulsen
Keyword(s):  
Clinical Trials ◽  
Data Sharing ◽  
Translational Medicine ◽  
Wearable Devices ◽  
Health Data ◽  
Future Developments ◽  
Academic Hospitals ◽  
Data Ownership ◽  
Professional Health ◽  
Valley Of Death

In recent years, more and more health data are being generated. These data come not only from professional health systems, but also from wearable devices. All these ‘big data’ put together can be utilized to optimize treatments for each unique patient (‘precision medicine’). For this to be possible, it is necessary that hospitals, academia and industry work together to bridge the ‘valley of death’ of translational medicine. However, hospitals and academia often are reluctant to share their data with other parties, even though the patient is actually the owner of his/her own health data. Academic hospitals usually invest a lot of time in setting up clinical trials and collecting data, and want to be the first ones to publish papers on this data. There are some publicly available datasets, but these are usually only shared after study (and publication) completion, which means a severe delay of months or even years before others can analyse the data. One solution is to incentivize the hospitals to share their data with (other) academic institutes and the industry. Here, we show an analysis of the current literature around data sharing, and we discuss five aspects of data sharing in the medical domain: publisher requirements, data ownership, growing support for data sharing, data sharing initiatives and how the use of federated data might be a solution. We also discuss some potential future developments around data sharing, such as medical crowdsourcing and data generalists.

scholarly journals The French Health Data Hub and the German Medical Informatics Initiatives: Two National Projects to Promote Data Sharing in Healthcare

2019 ◽  
Vol 28 (01) ◽  
pp. 195-202 ◽  
Author(s):  
Marc Cuggia ◽  
Stéphanie Combes
Keyword(s):  
Data Sharing ◽  
Medical Informatics ◽  
Data Privacy ◽  
Data Use ◽  
Health Data ◽  
The European Union ◽  
Global Approach ◽  
Data Governance ◽  
Academic Hospitals ◽  
Access Data

Objective: The diversity and volume of health data have been rapidly increasing in recent years. While such big data hold significant promise for accelerating discovery, data use entails many challenges including the need for adequate computational infrastructure and secure processes for data sharing and access. In Europe, two nationwide projects have been launched recently to support these objectives. This paper compares the French Health Data Hub initiative (HDH) to the German Medical Informatics Initiatives (MII). Method: We analysed the projects according to the following criteria: (i) Global approach and ambitions, (ii) Use cases, (iii) Governance and organization, (iv) Technical aspects and interoperability, and (v) Data privacy access/data governance. Results: The French and German projects share the same objectives but are different in terms of methodologies. The HDH project is based on a top-down approach and focuses on a shared computational infrastructure, providing tools and services to speed projects between data producers and data users. The MII project is based on a bottom-up approach and relies on four consortia including academic hospitals, universities, and private partners. Conclusion: Both projects could benefit from each other. A Franco-German cooperation, extended to other countries of the European Union with similar initiatives, should allow sharing and strengthening efforts in a strategic area where competition from other countries has increased.

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 Community Attitudes Towards Sharing Government Health Data with Private Companies: A Scoping Review

2020 ◽  
Vol 5 (5) ◽  
Author(s):  
Jackie Street ◽  
Belinda Fabrianesi ◽  
Rebecca Bosward ◽  
Stacy Carter ◽  
Annette Braunack-Mayer
Keyword(s):  
Data Sharing ◽  
Health Care Providers ◽  
Scoping Review ◽  
Public Attitudes ◽  
Health Data ◽  
Public Confidence ◽  
Care Providers ◽  
Private Industry ◽  
Good Communication ◽  
Government Health

IntroductionLarge volumes of health data are generated through the interaction of individuals with hospitals, government agencies and health care providers. There is potential in the linkage and sharing of administrative data with private industry to support improved drug and device provision but data sharing is highly contentious. Objectives and ApproachWe conducted a scoping review of quantitative and qualitative studies examining public attitudes towards the sharing of health data, held by government, with private industry for research and development. We searched four data bases, PubMed, Scopus, Cinahl and Web of Science as well as Google Scholar and Google Advanced. The search was confined to English-only publications since January 2014 but was not geographically limited. We thematically coded included papers. ResultsWe screened 6788 articles. Thirty-six studies were included primarily from UK and North America. No Australian studies were identified. Across studies, willingness to share non-identified data was generally high with the participant’s own health provider (84-91%) and academic researchers (64-93%) but fell if the data was to be shared with private industry (14-53%). There was widespread misunderstanding of the benefits of sharing data for health research. Publics expressed concern about a range of issues including data security, misuse of data and use of data to generate profit. Conditions which would increase public confidence in sharing of data included: strict safeguards on data collection and use including secure storage, opt-in or opt-out consent mechanisms, and good communication through trusted agents. Conclusion / ImplicationsWe identified a research gap: Australian views on sharing government health data with private industry. The international experience suggests that public scepticism about data sharing with private industry will need to be addressed by good communication about public benefit of data sharing, a strong program of public engagement and information sharing conducted through trusted entities.

Data sharing in the era of precision medicine: a scientometric analysis

2019 ◽  
Vol 2 ◽  
pp. 30-30
Author(s):  
Vincent Le Texier ◽  
Nesrine Henda ◽  
Stéphanie Cox ◽  
Marina Rousseau-Tsangaris ◽  
Pierre Saintigny
Keyword(s):  
Precision Medicine ◽  
Data Sharing ◽  
Scientometric Analysis

Societal Implications of Wearable Technology

2016 ◽  
pp. 238-266
Author(s):  
Katina Michael ◽  
Deniz Gokyer ◽  
Samer Abbas
Keyword(s):  
Wearable Devices ◽  
Point Of View ◽  
Security And Privacy ◽  
Societal Implications ◽  
Wearable Technologies ◽  
Future Developments ◽  
The Social ◽  
Depth Analysis ◽  
Pros And Cons ◽  
The University

This chapter presents a set of scenarios involving the GoPro wearable Point of View (PoV) camera. The scenarios are meant to stimulate discussion about acceptable usage contexts with a focus on security and privacy. The chapter provides a wide array of examples of how overt wearable technologies are perceived and how they might/might not be welcomed into society. While the scenario is based at the University of Wollongong campus in Australia, the main implications derived from the fictitious events are useful in drawing out the predicted pros and cons of the technology. The scenarios are interpreted and the main thematic issues are drawn out and discussed. An in depth analysis takes place around the social implications, the moral and ethical problems associated with such technology, and possible future developments with respect to wearable devices.

Security, Privacy, and Ownership Issues With the Use of Wearable Health Technologies

2018 ◽  
pp. 1068-1083
Author(s):  
Don Kerr ◽  
Kerryn Butler-Henderson ◽  
Tony Sahama
Keyword(s):  
Data Privacy ◽  
Wearable Technology ◽  
Health Data ◽  
Security And Privacy ◽  
Primary Concern ◽  
Health Technologies ◽  
State Security ◽  
Data Ownership ◽  
The Future ◽  
Data Theft

When considering the use of mobile or wearable health technologies to collect health data, a majority of users state security and privacy of their data is a primary concern. With users being connected 24/7, there is a higher risk today of data theft or the misappropriate use of health data. Furthermore, data ownership is often a misunderstood topic in wearable technology, with many users unaware who owns the data collected by a device, what that data can be used for and who can receive that data. Many countries are reviewing privacy governance in an attempt to clarify data privacy and ownership. But is it too late? This chapter explores the concepts of security and privacy of data from mobile and wearable technology, with specific examples, and the implications for the future.

scholarly journals The Canadian Path from Discovery to Implementation of Personalized Medicine Approaches

2017 ◽  
Vol 2 (Suppl. 1) ◽  
pp. 1-3
Author(s):  
Étienne Richer ◽  
Rachel Syme ◽  
Stephen M. Robbins ◽  
Paul Lasko
Keyword(s):  
Personalized Medicine ◽  
Precision Medicine ◽  
Health Research ◽  
New Technologies ◽  
Healthcare Delivery ◽  
Data Sources ◽  
Future Developments ◽  
Success Stories ◽  
Canadian Perspective

Personalized (or precision) medicine approaches are currently being introduced in healthcare delivery following the development of new technologies and of novel ways to integrate and analyze various data sources. This editorial describes the efforts invested since 2012 by the Canadian Institutes of Health Research (CIHR) to foster the development and implementation of personalized medicine in Canada. Success stories from past investments as well as future developments are presented from a Canadian perspective.

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