Massive amounts of data are collected and stored on a routine basis in virtually all domains of human activities. Such data are potentially useful to biomedicine. Yet, access to data for research purposes is hindered by the fact that different kinds of individual-patient data reside in disparate, unlinked silos. We propose that data cooperatives can promote much needed data aggregation and consequently accelerate research and its clinical translation. Data cooperatives enable direct control over personal data, as well as more democratic governance of data pools. This model can realize a specific kind of data economy whereby citizens and communities are empowered to steer data use according to their motivations, preferences, and concerns. Policy makers can promote this model by recognizing citizens' rights to access and to obtain a copy of their own data, and by funding distributed data infrastructures piloting new data aggregation models. ; ISSN:2210-5433 ; ISSN:2210-5441
In: Van Roessel , I , Reumann , M & Brand , A 2017 , ' Potentials and Challenges of the Health Data Cooperative Model ' , Public Health Genomics , vol. 20 , no. 6 , pp. 321-331 . https://doi.org/10.1159/000489994
Introduction: Currently, abundances of highly relevant health data are locked up in data silos due to decentralized storage and data protection laws. The health data cooperative (HDC) model is established to make this valuable data available for societal purposes. The aim of this study is to analyse the HDC model and its potentials and challenges. Results: An HDC is a health data bank. The HDC model has as core principles a cooperative approach, citizen-centredness, not-for-profit structure, data enquiry procedure, worldwide accessibility, cloud computing data storage, open source, and transparency about governance policy. HDC members have access to the HDC platform, which consists of the "core," the "app store," and the "big data." This, respectively, enables the users to collect, store, manage, and share health information, to analyse personal health data, and to conduct big data analytics. Identified potentials of the HDC model are digitization of healthcare information, citizen empowerment, knowledge benefit, patient empowerment, cloud computing data storage, and reduction in healthcare expenses. Nevertheless, there are also challenges linked with this approach, including privacy and data security, citizens' restraint, disclosure of clinical results, big data, and commercial interest. Limitations and Outlook: The results of this article are not generalizable because multiple studies with a limited number of study participants are included. Therefore, it is recommended to undertake further elaborate research on these topics among larger and various groups of individuals. Additionally, more pilots on the HDC model are required before it can be fully implemented. Moreover, when the HDC model becomes operational, further research on its performances should be undertaken. (c) 2018 The Author(s) Published by S. Karger AG, Basel
<b><i>Introduction:</i></b> Currently, abundances of highly relevant health data are locked up in data silos due to decentralized storage and data protection laws. The health data cooperative (HDC) model is established to make this valuable data available for societal purposes. The aim of this study is to analyse the HDC model and its potentials and challenges. <b><i>Results:</i></b> An HDC is a health data bank. The HDC model has as core principles a cooperative approach, citizen-centredness, not-for-profit structure, data enquiry procedure, worldwide accessibility, cloud computing data storage, open source, and transparency about governance policy. HDC members have access to the HDC platform, which consists of the "core," the "app store," and the "big data." This, respectively, enables the users to collect, store, manage, and share health information, to analyse personal health data, and to conduct big data analytics. Identified potentials of the HDC model are digitization of healthcare information, citizen empowerment, knowledge benefit, patient empowerment, cloud computing data storage, and reduction in healthcare expenses. Nevertheless, there are also challenges linked with this approach, including privacy and data security, citizens' restraint, disclosure of clinical results, big data, and commercial interest. <b><i>Limitations and Outlook:</i></b> The results of this article are not generalizable because multiple studies with a limited number of study participants are included. Therefore, it is recommended to undertake further elaborate research on these topics among larger and various groups of individuals. Additionally, more pilots on the HDC model are required before it can be fully implemented. Moreover, when the HDC model becomes operational, further research on its performances should be undertaken.
In: Bühler, M.M.; Calzada, I.; Cane, I.; Jelinek, T.; Kapoor, A.; Mannan, M.; Mehta, S.; Mookerje, V.; Nübel, K.; Pentland, A.; et al. Unlocking the Power of Digital Commons: Data Cooperatives as a Pathway for Data Sovereign, Innovative and Equitable Digital Communities. Digital 2023, 3, 146–171. https:
The term "big data" characterizes the massive amounts of data generation by the advanced technologies in different domains using 4Vs – volume, velocity, variety, and veracity - to indicate the amount of data that can only be processed via computationally intensive analysis, the speed of their creation, the different types of data, and their accuracy. High-dimensional financial data, such as time-series and space-time data, contain a large number of features (variables) while having a small number of samples, which are used to measure various real-time business situations for financial organizations. Such datasets are normally noisy, and complex correlations may exist between their features, and many domains, including financial, lack the al analytic tools to mine the data for knowledge discovery because of the high-dimensionality. Feature selection is an optimization problem to find a minimal subset of relevant features that maximizes the classification accuracy and reduces the computations. Traditional statistical-based feature selection approaches are not adequate to deal with the curse of dimensionality associated with big data. Cooperative co-evolution, a meta-heuristic algorithm and a divide-and-conquer approach, decomposes high-dimensional problems into smaller sub-problems. Further, MapReduce, a programming model, offers a ready-to-use distributed, scalable, and fault-tolerant infrastructure for parallelizing the developed algorithm. This article presents a knowledge management overview of evolutionary feature selection approaches, state-of-the-art cooperative co-evolution and MapReduce-based feature selection techniques, and future research directions.
BACKGROUND: In the case of immigrant health and wellness, data are the key limiting factor, where comprehensive national knowledge on immigrant health and health service utilisation is limited. New data and data silos are an inherent response to the increase in technology in the collection and storage of data. The Health Data Cooperative (HDC) model allows members to contribute, store, and manage their health-related information, and members are the rightful data owners and decision-makers to data sharing (e g. research communities, commercial entities, government bodies). OBJECTIVE: This review attempts to scope the literature on HDC and fulfill the following objectives: 1) identify and describe the type of literature that is available on the HDC model; 2) describe the key themes related to HDCs; and 3) describe the benefits and challenges related to the HDC model. METHODS: We conducted a scoping review using the five-stage framework outlined by Arskey and O'Malley to systematically map literature on HDCs using two search streams: 1) a database and grey literature search; and 2) an internet search. We included all English records that discussed health data cooperative and related key terms. We used a thematic analysis to collate information into comprehensive themes. RESULTS: Through a comprehensive screening process, we found 22 database and grey literature records, and 13 Internet search records. Three major themes that are important to stakeholders include data ownership, data security, and data flow and infrastructure. CONCLUSIONS: The results of this study are an informative first step to the study of the HDC model, or an establishment of a HDC in immigrant communities. KEY WORDS: community health, health data, cooperative, and citizen data empowermen