scholarly journals Utilising the FOXS Stack for FAIR Architected Data Access

2021 ◽  
Author(s):  
John Meredith ◽  
Nik Whitehead ◽  
Michael Dacey

A FOXS stack assembles HL7 FHIR, openEHR, IHE XDS and SNOMED CT as an operational clinical data platform to build digital systems. This paper analyses its applicability for FAIR-enabled medical research based on a summary of key principles. It highlights the benefit of the blended approach to operational technology stacks for health systems, and a need for industry standard technologies to enable greater semantic coherence for primary/secondary data use.

Author(s):  
Mohamed Lambarki ◽  
Jori Kern ◽  
David Croft ◽  
Cäcilia Engels ◽  
Noemi Deppenwiese ◽  
...  

In the field of oncology, a close integration of cancer research and patient care is indispensable. Although an exchange of data between health care providers and other institutions such as cancer registries has already been established in Germany, it does not take advantage of internationally coordinated health data standards. Translational cancer research would also benefit from such standards in the context of secondary data use. This paper employs use cases from the German Cancer Consortium (DKTK) to show how this gap can be closed using a harmonised FHIR-based data model, and how to apply it to an existing federated data platform.


Healthcare is very important in the medical field.Inorder to satisfy this area,we have proposed our scheme using the big data platform for data communication as well as data access. We have also used the java program for developing the application-oriented area. In this scheme, an unique concept has been implemented like user can request the information about the health to the officer, then the officer will communicate with Hadoop Distributed File System (HDFS). Then HDFS will get the information from the medical research Centre without any knowledge of intermediate. In this system we also satisfied the patients on getting the information about their health on an easy basis. HDFS will help medical research Centre for organizing the people’s information in HL7 format as well and distributed. So that this system is high in use for the medical field in the future, we have also satisfied the accuracy and speed of the communication in this project.


2021 ◽  
Vol 8 (1) ◽  
pp. 31-40
Author(s):  
Mohammed Al Omari

The use of data in medical research that was originally collected for different purposes, known as secondary data, is an effective way to conduct reliable and cost-effective studies so as to progress knowledge in medicine. A number of serious practical, ethical and legal issues and concerns about this process exist, however. Ensuring a high level of data quality is imperative to produce reliable results, and researchers may face accessibility problems. Projects designed to alleviate these issues are underway, however, lowering the cost and increasing the access to secondary data even further. Although secondary data is de-identified to protect the confidentiality, ethical problems of individual rights versus the benefit of society persist, leading some to call for a new ‘macroethics’ surrounding data use. Legislation to this end has been introduced in many countries, but issues relating to the exemptions it offers and its interpretability remain. To ensure that the use of secondary data in medical research can continue to accelerate the pace of development in medicine, a global effort involving technological and ethical standardization needs to be developed.  


2021 ◽  
Vol 7 (1) ◽  
Author(s):  
C. Atkin ◽  
B. Crosby ◽  
K. Dunn ◽  
G. Price ◽  
E. Marston ◽  
...  

Abstract Background England operates a National Data Opt-Out (NDOO) for the secondary use of confidential health data for research and planning. We hypothesised that public awareness and support for the secondary use of health data and the NDOO would vary by participant demography and healthcare experience. We explored patient/public awareness and perceptions of secondary data use, grouping potential researchers into National Health Service (NHS), academia or commercial. We assessed awareness of the NDOO system amongst patients, carers, healthcare staff and the public. We co-developed recommendations to consider when sharing unconsented health data for research. Methods A patient and public engagement program, co-created and including patient and public workshops, questionnaires and discussion groups regarding anonymised health data use. Results There were 350 participants in total. Central concerns for health data use included unauthorised data re-use, the potential for discrimination and data sharing without patient benefit. 94% of respondents were happy for their data to be used for NHS research, 85% for academic research and 68% by health companies, but less than 50% for non-healthcare companies and opinions varied with demography and participant group. Questionnaires showed that knowledge of the NDOO was low, with 32% of all respondents, 53% of all NHS staff and 29% of all patients aware of the NDOO. Recommendations to guide unconsented secondary health data use included that health data use should benefit patients; data sharing decisions should involve patients/public. That data should remain in close proximity to health services with the principles of data minimisation applied. Further, that there should be transparency in secondary health data use, including publicly available lists of projects, summaries and benefits. Finally, organisations involved in data access decisions should participate in programmes to increase knowledge of the NDOO, to ensure public members were making informed choices about their own data. Conclusion The majority of participants in this study reported that the use of healthcare data for secondary purposes was acceptable when accessed by NHS. Academic and health-focused companies. However, awareness was limited, including of the NDOO. Further development of publicly-agreed recommendations for secondary health data use may improve both awareness and confidence in secondary health data use.


INOVATOR ◽  
2018 ◽  
Vol 7 (2) ◽  
pp. 168
Author(s):  
Leny Muniroh

<p>The research objective are to analyze handbag Small-Medium Enterprise (SME) performance and the effect of infrastructure development on MSE performances in Bojong Rangkas Village, District of Ciampea, Bogor Regency. The research conducted from Pebruary to May 2010. Primary and secondary data use to the purposes. The sampling consisted of 30 SME respondents for observation period 2008 and 2009. The production function specified using Cobb-Douglass. The regression results indicated the model significant at ? = 0.05. Sig-t test indicates that all independent variables shows positive sign. At ? = 0.30, labor (0.172), material (0.000) and dummy year (0.272) has positive and significant effect on production. This result indicate that road infrastructre development has positive effect on handbag SME production. As reccomendation, there is a need another support such as soft infrastructure (training) to realize the location as center of handbag SME in the regency</p>


2021 ◽  
Author(s):  
Mark Howison ◽  
Mintaka Angell ◽  
Michael Hicklen ◽  
Justine S. Hastings

A Secure Data Enclave is a system that allows data owners to control data access and ensure data security while facilitating approved uses of data by other parties. This model of data use offers additional protections and technical controls for the data owner compared to the more commonly used approach of transferring data from the owner to another party through a data sharing agreement. Under the data use model, the data owner retains full transparency and auditing over the other party’s access, which can be difficult to achieve in practice with even the best legal instrument for data sharing. We describe the key technical requirements for a Secure Data Enclave and provide a reference architecture for its implementation on the Amazon Web Services platform using managed cloud services.


Jurnal Akta ◽  
2018 ◽  
Vol 5 (1) ◽  
pp. 211
Author(s):  
Magmun Migfar ◽  
Amin Purnawan

ABSTRAKDalam memberikan kredit, Perusahaan Pembiayaan wajib mempunyai keyakinan didasarkan pada unsur perinsip kehati-hatian biasa di kenal dengan 5C, yaitu terdiri dari character (watak), capacity (kemampuan), capital (modal), collateral (jaminan), dan condition of economic (kondisi ekonomi).Di dalam penelitian penulis membuat rumusan masalahanuntuk mengetahui tanggung jawab para pihak dalam pembutan akta jaminan fidusia pada Notaris dan penyelesaian sengketanya apabila debitur mengalihkan objek jaminan fidusia tanpa persetujuan tertulis oleh pihak PT. Bussan auto Finance (BAF) Rembang.Penelitian ini merupakan penelitian yang bersifat diskriptif dan apabila dilihat dari tujuannya teremasuk penelitian hukum empiris. Lokasi penelitian di PT. BAF Rembang. Jenis data yang digunakan meliputi data primer dan data sekunder. Teknik pengumpulan data yang dipergunakan yaitu melalui penelitian kepustakaan dan wawancara. Analisis data menggunakan kualitatif analitis.Berdasarkan hasil penelitian dapat diketahui dalam perjanjian pembiayaan antara kreditur dan debitur saling mengikatkan diri, debitur harus membaca dan memahami surat perjanjian pembiayaan, sebelum melakukan kesepakatan sengan Leasing, setelah menandatangi perjanjian pembiayaan, debitur harus memenuhi kewajiban membayar angsuran secara tepat waktu sesuai dengan besaran dan tanggal yang telah disepakati, kemudian timbulah hak dan kewajiban supaya jangan sampai ada konflik atau kesalah pahaman yang bias merugikan debitur dikemudian hari.Dalam hal benda jaminan yang menjadi objek jaminan fidusia dialihkan kepada pihak ketiga berlaku asas drot de suite, kreditur tetap dapat mengeksekusi benda jaminan tersebut di tangan siapaun benda tersebut berada. Pengalihan benda yang menjadi objek jaminan fidusia pada pihak ketiga dan seterusnya tidak menghalangi hak kreditur untuk tetap mengeksekusi benda jaminan fidusia tersebut. Memang dalam peneyelesain sengketa benda jamian fidusia di PT BAF Rembang masih mengedepankan cara musyawarah dahulu akan tetapi jika PT BAF Rembang berpedoman pada POJK No.29/POJK.05/2014 Tentang Penyelenggaraan Usaha Perusahaan Pembiayaan dan perlu adanya pendampingan dai pihak kepolisian maka akan sangat mudah dan mungkin untuk mengatasi debitur yang nakal.Kata kunci : Debitur, Kreditur, Eksekusi Benda Jaminan Fidusia.           ABSTRACTIn granting credit, a Financing Company must have confidence based on the usual principle of prudence known as 5C, which consists of character, capability, capital, collateral and condition of economic ( economic conditions). In the study the authors make the formulation of the problem to know the responsibility of the parties in the fiduciary guarantee certificate pembutan notary and settlement of disputes if the debtor divert the fiduciary guarantee object without written approval by the PT. Bussan auto Finance (BAF) Rembang.Penelitian is a descriptive study and when viewed from its purpose including research empirical law. Research location at PT. BAF Rembang. Types of data used include primary data and secondary data. Data collection techniques used are through literature research and interviews. Analytical data use qualitative analytical.Based on the results of the research can be known in the financing agreement between the creditor and the debtor bind each other, the debtor must read and understand the letter of financing agreement, before making leasing agreement, after signing the financing agreement, the debtor must meet the obligation to pay installments in a timely manner in accordance with the amount and date which has been agreed, then arise rights and obligations so that there will be no conflicts or misunderstandings that bias detrimental to the debtor in the future. In the event that the collateral object becomes the object of fiduciary guarantee transferred to a third party applies the principle of drot de suite, the lender can still execute the guarantee object in the hands of whoever the object is located. The transfer of objects which become the object of fiduciary collateral to a third party and so on shall not preclude the right of the creditor to keep executing the fiduciary assurance object. Indeed, in peneyelesain dispute fiduciary jamian objects in PT BAF Rembang still put forward the first musyawarah way but if PT BAF Rembang based on POJK No.29 / POJK.05 / 2014 About the Implementation of Financing Company Business and the need for assistance from the police then it will be very easy and possibly to deal with naughty debtors.Keywords: Debtor, Creditors, Execution of Fiduciary Guarantee Items.


SENTRALISASI ◽  
2022 ◽  
Vol 11 (1) ◽  
pp. 77
Author(s):  
Putri Noviati ◽  
Elva Nuraina ◽  
Nur Wahyuning Sulistyowati

This study aims to analyze PT INKA's export marketing strategy towards competitive advantage until 2018. Researchers use primary and secondary data sources with interview and documentation data collection techniques. The results of the study revealed that PT. INKA has: (1) Strength, very competitive pricing power and strong human resources, especially the marketing team, in addition to the influence of marketing assistance from the ambassador (RI for overseas); (2) Weaknesses in the export marketing strategy lie in production, one of which is engines and wheels which are still imported by China, which does not yet have the International Railway Industry Standard Certification (IRIS); (3) Opportunities, can make efforts to further strengthen the penetration of Indonesian companies in the African region; (4) Threats, to providers of facilities and infrastructure needs that must be obtained from imports from other countries, besides that competitors are afraid to dare to reduce interest costs or extend the tenor for the purchase of goods. The high taxes that must be issued for the delivery of goods are the biggest threat, this is confirmed by the informants.


2018 ◽  
Author(s):  
Kimberly Megan Scott ◽  
Melissa Kline

As more researchers make their datasets openly available, the potential of secondary data analysis to address new questions increases. However, the distinction between primary and secondary data analysis is unnecessarily confounded with the distinction between confirmatory and exploratory research. We propose a framework, akin to library book checkout records, for logging access to datasets in order to support confirmatory analysis where appropriate. This would support a standard form of preregistration for secondary data analysis, allowing authors to demonstrate that their plans were registered prior to data access. We discuss the critical elements of such a system, its strengths and limitations, and potential extensions.


Author(s):  
Shirley Wong ◽  
Victoria Schuckel ◽  
Simon Thompson ◽  
David Ford ◽  
Ronan Lyons ◽  
...  

IntroductionThere is no power for change greater than a community discovering what it cares about.1 The Health Data Platform (HDP) will democratize British Columbia’s (population of approximately 4.6 million) health sector data by creating common enabling infrastructure that supports cross-organization analytics and research used by both decision makers and cademics. HDP will provide streamlined, proportionate processes that provide timelier access to data with increased transparency for the data consumer and provide shared data related services that elevate best practices by enabling consistency across data contributors, while maintaining continued stewardship of their data. HDP will be built in collaboration with Swansea University following an agile pragmatic approach starting with a minimum viable product. Objectives and ApproachBuild a data sharing environment that harnesses the data and the understanding and expertise about health data across academe, decision makers, and clinicians in the province by: Enabling a common harmonized approach across the sector on: Data stewardship Data access Data security and privacy Data management Data standards To: Enhance data consumer data access experience Increase process consistency and transparency Reduce burden of liberating data from a data source Build trust in the data and what it is telling us and therefore the decisions made Increase data accessibility safely and responsibly Working within the jurisdiction’s existing legislation, the Five Safes Privacy and Security Framework will be implemented, tailored to address the requirements of data contributors. ResultsThe minimum viable product will provide the necessary enabling infrastructure including governance to enable timelier access, safely to administrative data to a limited set of data consumers. The MVP will be expanded with another release planned for early 2021. Conclusion / ImplicationsCollaboration with Swansea University has enabled BC to accelerate its journey to increasing timelier access to data, safely and increasing the maturity of analytics by creating the enabling infrastructure that promotes collaboration and sharing of data and data approaches. 1 Margaret Wheatley


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