Public attitudes to the use of routinely and non-routinely collected healthcare data in dementia and brain health research. (Preprint)

2021 ◽  
Author(s):  
Sarah Gregory ◽  
Lewis Killin ◽  
Hannah Pullen ◽  
Clare Dolan ◽  
Matthew Hunter ◽  
...  
Keyword(s):  
Big Data ◽  
Focus Groups ◽  
Health Research ◽  
Open Data ◽  
Data Access ◽  
Brain Health ◽  
The Public ◽  
Healthcare Data ◽  
Study Results ◽  
Research Studies

BACKGROUND Background: Harnessing the power of big data has unexplored potential in the field of dementia and brain health research. However, as interest in big data increases it is important to learn what the public understands about the use of their routinely collected healthcare data for research purposes, and their attitudes to such use. Participants’ data is increasingly collected in studies with open-data access processes in place, and through informed consent processes, participants show their willingness to share their data in this way. There remains an inherent flaw in research studies whereby the participants may not reflect the population at large representing a sampling bias. Access to medical records allows research studies to include a wholly representative sample. OBJECTIVE This study aimed to explore attitudes held by members of the public on the use of their healthcare data for dementia research purposes. METHODS Methods: Data was collected in a series of focus groups with semi-structured discussions. Transcripts from the focus groups were analysed using thematic analysis. RESULTS Results: Participants reported a willingness for their anonymised healthcare data to be accessed and used for research purposes, with some caveats for identifiable or highly sensitive data. Participants were happier for trusted organisations, such as the UK’s National Health Service and universities, to access their data compared to pharmaceutical companies. Clear and transparent communication about both the use of healthcare data in research studies and about study results was highlighted as important to participants. There was general misunderstanding about what healthcare data included and how researchers use healthcare data. CONCLUSIONS Conclusions: Overall, our findings underline the importance of clear communication to build trust and understand in the public about how their healthcare data can be used to support high quality dementia and brain health focussed data research. CLINICALTRIAL NA

scholarly journals Data Management at the French National Audiovisual Institute (Ina)

Atlanti ◽  
2016 ◽  
Vol 26 (1) ◽  
pp. 101-108
Author(s):  
Eleonore Alquier
Keyword(s):  
Data Mining ◽  
Big Data ◽  
General Public ◽  
Open Data ◽  
Digital Technologies ◽  
Data Access ◽  
Technical Data ◽  
Production Processes ◽  
Data Policy ◽  
Online Access

The French National Audiovisual Institute has been responsible since 1974 for the preservation of the audiovisual heritage produced by national broadcasting corporation (or “Office de radio et television française”: ORTF, for French radio and television corporation). The massive digitalization of these collections in the 1990s, the native digital capture of 120 channels since 2001, the opening of a “general public” website in 2006, are some of the steps taken by the Institute to progressively take into account the digital technologies to benefit the audiovisual preservation. This proposal of presentation would provide an update on the evolution of our processing, concerning most specifically a multi-year project which aims, linked to a new big data policy, to harmonize descriptive metadata according to common thesaurus and to streamline production processes as well as to promote new uses of these contents within the Institute (partial automation of documentary processing by automatic detecting of quoted or represented entities (faces, names, …), automatic articulation of documentary and legal metadata, …), but also outside of the Institute (online access to open data, access to media by technical data mining, …).

Open Data in a Big Data World

2016 ◽  
Vol 38 (2) ◽  
Keyword(s):  
Developing Countries ◽  
Big Data ◽  
Open Access ◽  
Environmental Protection ◽  
Health Research ◽  
Smart Cities ◽  
Open Data ◽  
Scientific Process ◽  
Guiding Principles ◽  
Global Research

AbstractFour major international science organisations (ICSU, ISSC, IAP and TWAS) have joined together to develop and support an accord that includes a set of guiding principles on open access to big data, which is necessary to protect the scientific process and assure that developing countries can participate more fully in the global research enterprise. Limits on access to big data knowledge, they warn, raises the risk that progress will slow in areas such as advanced health research, environmental protection, food productio,n and the development of smart cities.

Integrating Open and Big Data via ‘e-Oman’: prospects and issues

2016 ◽  
Vol 9 (4) ◽  
pp. 607-621 ◽  
Author(s):  
Stuti Saxena
Keyword(s):  
Higher Education ◽  
Big Data ◽  
Case Studies ◽  
Open Data ◽  
Future Research ◽  
The Public ◽  
Online Portal ◽  
Higher Education Admissions ◽  
The Government ◽  
Government Portal

While ‘e-Oman’ is a repository of Open Data, its significance in terms of being a potent source for Big Data deserves attention. This paper seeks to underscore how important is the integration of Big and Open Data in e-Oman – the e-government portal of Oman. Drawing evidence from four case studies based on the Higher Education Admissions Center (HEAC) ‘e-Portal’ – an online portal meant for the payment of electricity bills, traffic fines and visa applications – the paper lends support to the implementation of integration of Big and Open Data which, for a number of purposes, could be better harnessed. Thus, while the paper identifies the opportunities entailed in achieving the integration of Big and Open Data in the context of the case studies chosen for the study, there are concomitant challenges impacting this integration that need to be addressed. Specifically, e-Oman needs to be updated with Open Data and the government needs to take steps to build and maintain a robust physical, human and information infrastructure for harnessing the potential of integrating Open and Big Data in the public sector. The paper concludes with directions for future research.

scholarly journals Music and Brain Health: Recommendations From the Global Council on Brain Health, an AARP Collaborative

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 783-784
Author(s):  
Sarah Lock
Keyword(s):  
Older Adults ◽  
Behavior Change ◽  
Health Research ◽  
Evidence Based ◽  
Brain Health ◽  
Music Participation ◽  
The Public ◽  
The World ◽  
The Impact ◽  
Consensus Report

Abstract Music is a complex auditory stimulus that resonates on a physiological, psychological, and spiritual level for people around the world. This symposium will provide highlights from the Global Council on Brain Health consensus report aimed at helping the public to understand the potential that music holds for supporting and enriching brain health. The Global Council on Brain Health (GCBH) is an independent collaborative of scientists, clinicians, scholars, and policy experts convened by AARP to provide evidence-based advice on what people and professionals can do to maintain and improve brain health. The Council translates scientific research into actionable recommendations for the public that will help drive behavior change in individuals across communities and cultures. Issue specialists from around the world were brought together to build consensus, issue recommendations, and offer practical tips. Moreover, we will feature research from our issue experts and provide an overview of the impact of music participation on older adults, including those with dementia. Data from surveys fielded by AARP research, developed in consultation with the GCBH, will also be featured. In sum, this presentation will highlight the work of the Council at the forefront of this international effort to translate advancements in brain health research to the wider public, with an emphasis on individuals aged50 and older.

scholarly journals Big Data and Biomedical Informatics: A Challenging Opportunity

2014 ◽  
Vol 23 (01) ◽  
pp. 08-13 ◽  
Author(s):  
Riccardo Bellazzi
Keyword(s):  
Big Data ◽  
Biomedical Informatics ◽  
Concept Drift ◽  
Clinical Care ◽  
Healthcare Delivery ◽  
Data Access ◽  
Machine Learning Algorithms ◽  
Translational Bioinformatics ◽  
Proper Actions ◽  
Research Studies

SummaryBig data are receiving an increasing attention in biomedicine and healthcare. It is therefore important to understand the reason why big data are assuming a crucial role for the biomedical informatics community. The capability of handling big data is becoming an enabler to carry out unprecedented research studies and to implement new models of healthcare delivery. Therefore, it is first necessary to deeply understand the four elements that constitute big data, namely Volume, Variety, Velocity, and Veracity, and their meaning in practice. Then, it is mandatory to understand where big data are present, and where they can be beneficially collected. There are research fields, such as translational bioinformatics, which need to rely on big data technologies to withstand the shock wave of data that is generated every day. Other areas, ranging from epidemiology to clinical care, can benefit from the exploitation of the large amounts of data that are nowadays available, from personal monitoring to primary care. However, building big data-enabled systems carries on relevant implications in terms of reproducibility of research studies and management of privacy and data access; proper actions should be taken to deal with these issues. An interesting consequence of the big data scenario is the availability of new software, methods, and tools, such as map-reduce, cloud computing, and concept drift machine learning algorithms, which will not only contribute to big data research, but may be beneficial in many biomedical informatics applications. The way forward with the big data opportunity will require properly applied engineering principles to design studies and applications, to avoid preconceptions or over-enthusiasms, to fully exploit the available technologies, and to improve data processing and data management regulations.

scholarly journals Una perspectiva documental y bibliotecológica sobre el big data y el periodismo de datos

2018 ◽  
Vol 32 (74) ◽  
pp. 77
Author(s):  
Antonio García Jiménez ◽  
Beatriz Catalina García
Keyword(s):  
Social Networks ◽  
Big Data ◽  
Rapid Growth ◽  
Data Dissemination ◽  
Open Data ◽  
Data Access ◽  
Redes Sociales ◽  
Key Factor ◽  
The Creation ◽  
Medios De Comunicacion

La aplicación de nuevos sistemas para la creación, almacenamiento y difusión de la información ha tenido como uno de los factores clave el exponencial desarrollo de la apertura de datos a través de mecanismos técnicos y computacionales. El open data y el big data, así como las redes sociales, han transformado el trabajo en los medios de comunicación en un mundo informativamente globalizado. Esta transformación conlleva también cambios en las tareas de documentalistas y periodistas. Mediante el análisis sobre la literatura existente, se analizan los procesos, métodos e instrumentos aplicados en la documentación de medios y en el periodismo a partir de la perspectiva del big data, evidenciando casos particulares. Aparte de los cambios rutinarios de los profesionales, se observa una serie de contradicciones entre la web semántica yel big data conforme a los objetivos de transparencia y comprensión de la información. Finalmente es necesario plantear el valor real que la difusión de datos aporta frente al filtrado de éstos desde el plano puramente documental.AbstractThe implementation of new systems for the creation, storage and dissemination of information is a key factor in the rapid growth of open data access through technical and computational mechanisms. Open data, big data, and social networks have transformed the work in mass media, driving the creation of a world of globalized information. This transformation also involves changes in the work of documentalists and journalists. Through a review of current research, including case studies, this paper analyzes from the standpoint of big data the processes,  methods and tools oriented to media documentation. In addition to changes in professional routines, a set of contradictions between the semantic web and big data with regard to the objectives of transparency and understanding of information. Finally, from the documentary level, it is important to weigh the benefits reaped by broad data dissemination against those provided by filtering.

Big Data in Healthcare

2014 ◽  
pp. 35-58 ◽  
Author(s):  
Yiannis Koumpouros
Keyword(s):  
Big Data ◽  
Healthcare Professionals ◽  
Healthcare Providers ◽  
Open Data ◽  
Healthcare Systems ◽  
Tipping Point ◽  
Healthcare Industry ◽  
Healthcare Data ◽  
Big Data Technologies ◽  
Legal Barriers

The era of open data in healthcare is under way. The progress in technologies along with their adoption by the healthcare providers and the maturity of the citizens has brought the healthcare industry to the tipping point. An unprecedented amount of healthcare data is being generated today. This data comes from researchers, healthcare professionals and organizations, and patients. If we can harness this data, it can help us improve our understanding of disease and pinpoint new and improved therapies more efficiently than ever before. Big Data technologies are coming to market in a rapid way. The challenges, however, are still there due to fragmented systems and databases, semantic differences, legal barriers, and others. The hidden and unexploited knowledge is hindered by these barriers. The big data revolution promises a solution both to this situation, as well as to act as a catalyst to the viability of the healthcare systems. This is supported by the numerous efforts and explored in this chapter.

Big Data in Healthcare

2015 ◽  
pp. 23-46 ◽  
Author(s):  
Yiannis Koumpouros
Keyword(s):  
Big Data ◽  
Healthcare Professionals ◽  
Healthcare Providers ◽  
Open Data ◽  
Healthcare Systems ◽  
Tipping Point ◽  
Healthcare Industry ◽  
Healthcare Data ◽  
Big Data Technologies ◽  
Legal Barriers

The era of open data in healthcare is under way. The progress in technologies along with their adoption by the healthcare providers and the maturity of the citizens has brought the healthcare industry to the tipping point. An unprecedented amount of healthcare data is being generated today. This data comes from researchers, healthcare professionals and organizations, and patients. If we can harness this data, it can help us improve our understanding of disease and pinpoint new and improved therapies more efficiently than ever before. Big Data technologies are coming to market in a rapid way. The challenges, however, are still there due to fragmented systems and databases, semantic differences, legal barriers, and others. The hidden and unexploited knowledge is hindered by these barriers. The big data revolution promises a solution both to this situation, as well as to act as a catalyst to the viability of the healthcare systems. This is supported by the numerous efforts and explored in this chapter.

Creating value using public big data: comparison of driving factors from the provider's perspective

2020 ◽  
Vol ahead-of-print (ahead-of-print) ◽  
Author(s):  
Ji Yeon Cho ◽  
Bong Gyou Lee
Keyword(s):  
Big Data ◽  
Public Sector ◽  
Open Data ◽  
Analytic Network Process ◽  
Analytic Hierarchy ◽  
Content Type ◽  
The Public ◽  
Open Government Data ◽  
Network Process ◽  
Government Data

PurposeThe revitalization of big data has gained attention in the public sector. However, such open government data (OGD) is facing major challenges with respect to data quality and limited use. To solve this problem, this study analyzes the factors driving the use of OGD from the perspective of data providers in the public sector.Design/methodology/approachUsing the analytic hierarchy process and analytic network process methodologies, the importance of the factors driving the use of big data in the public sector was ranked. In addition, the different characteristics of tasks among the departments in a public agency were compared based on expert interviews.FindingsThe factors driving OGD use are not only political environment or the technological environment. The importance of the institutional culture within the organization increases with the motivation of the data provider. The priorities of the OGD factors also depend on the objectives of the department involved.Originality/valueThis study provides implications for improving the publication of open data by analyzing the priorities of the factors driving its use from the perspective of big data providers. It focuses on different perceptions of the factors valued by public officials in charge of data in institutions. The results suggest the need to explore officials' perceptions of value creation in big data fields.

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