scholarly journals Collection and Reporting of Indigenous Status Information in Cancer Registries Around the World

2020 ◽  
pp. 133-142
Author(s):  
Abbey Diaz ◽  
Isabelle Soerjomataram ◽  
Suzanne Moore ◽  
Lisa J. Whop ◽  
Freddie Bray ◽  
...  
Keyword(s):  
Information Systems ◽  
Data Collection ◽  
Life Expectancy ◽  
Indigenous People ◽  
Point Of Care ◽  
Cancer Registries ◽  
Quality Data ◽  
Indigenous Status ◽  
Status Information ◽  
Status Data

PURPOSE Worldwide, Indigenous people often have disproportionally worse health and lower life expectancy than their non-Indigenous counterparts. Despite the impact of cancer on life expectancy, little is known about the burden of cancer for Indigenous people primarily because of the paucity of data. We investigated the collection and reporting of Indigenous status information among a global sample of population-based cancer registries (PBCRs). PARTICIPANTS AND METHODS An online survey was e-mailed to eligible registries using set inclusion criteria. Respondents were asked questions on the collection, reporting, and quality assessment of Indigenous status in their registers. RESULTS Eighty-three PBCRs from 25 countries were included. Of these, 66% reported that their registry collected Indigenous status data, although the quality of this variable had been assessed in less than half in terms of completeness (38%) and accuracy (47%). Two thirds of PBCRs who collected Indigenous status data (67%), from nine of 25 countries responded that cancer statistics for Indigenous people were reported using registry data. Key barriers to the collection of Indigenous status information included the lack of data collection at the point of care (79%), lack of transfer of Indigenous status to the cancer registry (46%), inadequate information systems (43%), and legislative limitations (32%). Important variations existed among world regions, although the lack of Indigenous status data collection at the point of care was commonly reported across all regions. CONCLUSION High-quality data collection is lacking for Indigenous peoples in many countries. To ensure the design and implementation of cancer control activities required to reduce disparities for Indigenous populations, health information systems, including cancer registries, need to be strengthened, and this must be done in dialogue with Indigenous leaders.

Formation of an international quality improvement collaborative for palliative care: The Global Palliative Care Quality Alliance (GPCQA).

2014 ◽  
Vol 32 (31_suppl) ◽  
pp. 91-91
Author(s):  
Arif Kamal ◽  
Jonathan Nicolla ◽  
Fred Friedman ◽  
Charles S. Stinson ◽  
Laura Patel ◽  
...  
Keyword(s):  
Palliative Care ◽  
Quality Improvement ◽  
Data Collection ◽  
Best Practices ◽  
Point Of Care ◽  
Shared Vision ◽  
Care Quality ◽  
Quality Data ◽  
Spiritual Assessment ◽  
National Quality

91 Background: Formal mechanisms to share data on quality remain immature in specialty palliative care. As the field grows, infrastructure that promotes collaboration among academic and community-based practice will be required to foster comparisons and benchmarking of data to inform areas for quality improvement. Further, such relationships will create a palliative care “quality improvement laboratory”, where proposed guidelines and best practices can be developed, implemented, and tested. Methods: We set out to bring together specialty palliative care practices with a shared vision for collaborative quality improvement. We modeled our approach after the Institute for Healthcare Improvement Breakthrough Series alongside our Rapid Learning Quality Improvement paradigm. We use a set of common data collection procedures, across an electronic point-of-care platform called Quality Data Collection Tool (QDACT), alongside a centralized data registry. Further, we meet and discuss challenges and issues, compare best practices, and brainstorm new projects through biweekly conference calls. Results: We have created a multi-institutional collaboration for quality assessment and improvement in specialty palliative care. Termed the Global Palliative Care Quality Alliance, we have brought together 11 academic and community organizations, both general and oncology-specific, across six states to study various areas of quality practice. Short-term, we will conduct rapid-cycling quality improvement projects addressing National Quality Forum domains for quality palliative care, including documentation of spiritual assessment and timely advance care planning. Long-term, we aim to study the link between quality measure adherence and outcomes and further align our initiatives with those of other large consortia, like the Palliative Care Research Cooperative and Palliative Care Quality Network. Conclusions: Collaborative quality improvement is needed in specialty palliative care across a national platform. Developing the infrastructure to perform standardized quality improvement is achievable across multiple palliative care settings.

scholarly journals Identifying Pediatric Trauma Data Gaps at a Large Urban Trauma Referral Center in Santiago, Chile

2017 ◽  
Vol 6 (3) ◽  
pp. 169-176 ◽  
Author(s):  
Etienne St-Louis ◽  
Daniel Roizblatt ◽  
Dan L Deckelbaum ◽  
Robert Baird ◽  
César V Millán ◽  
...  
Keyword(s):  
Data Collection ◽  
Trauma Registry ◽  
Point Of Care ◽  
Health Centre ◽  
Pediatric Trauma ◽  
Quality Data ◽  
Trauma Patients ◽  
Referral Center ◽  
Low Middle Income Countries ◽  
Data Gaps

ABSTRACT Background Trauma registries contribute to improving trauma care, but their impact is highly dependent on the quality of the data. A simplified point of care pediatric trauma registry (PTR) was developed at the Centre for Global Surgery from the McGill University Health Centre (MUHC) for implementation in Low-middle income countries (LMICs). Pilot deployment was launched at a large urban trauma center in May 2016 in Santiago, Chile. Prior to deployment, we sought to identify missing data in existing trauma records in order to optimize PTR practicality and user benefit. Materials and methods The project was approved by the local Institutional Review Board. Retrospective chart review was conducted on trauma patients below the age of 15 who were evaluated at the emergency room (ER) of Hospital Dr. Sotero del Rio (HSR) between January 1st and June 30th 2015. Data missingness was evaluated for each component of the PTR (demographics, mechanism, injury and outcomes). Potential independent predictors of data missingness were evaluated using multiple linear regression. Results A total of 351 patients were included. Demographic data missingness ranged from 0% (age) to 95% (mode of arrival). Mechanism data missingness ranged from 6% (cause of injury) to 42% (site of injury). Injury physiology data missingness ranged from 37% (oxygen saturation) to 99% (respiratory rate). Interestingly, mean injury anatomy data missingness was significantly inferior to physiology data (0.6% vs. 78.6%, p < 0.05). Outcome data missingness reached 54% at 2 weeks. Conclusion In resource-limited settings, high quality data is essential to guide responsible resource allocation. We believe implementation of a simplified trauma registry has the potential to reduce data gaps for pediatric trauma patients by streamlining trauma data collection at point of care. This should include streamlined data collection with a short per-patient completion time, and should forego attempts to collect data at 2 weeks, which has proven unsuccessful. How to cite this article St-Louis E, Roizblatt D, Deckelbaum DL, Baird R, Millán CV, Ebensperger A, Razek T. Identifying Pediatric Trauma Data Gaps at a Large Urban Trauma Referral Center in Santiago, Chile. Panam J Trauma Crit Care Emerg Surg 2017;6(3):169-176.

Development of an electronic point-of-care quality monitoring system for palliative care.

2012 ◽  
Vol 30 (34_suppl) ◽  
pp. 291-291
Author(s):  
Arif Kamal ◽  
Janet Bull ◽  
Amy Pickar Abernethy
Keyword(s):  
Palliative Care ◽  
User Interface ◽  
Data Collection ◽  
Point Of Care ◽  
Quality Measures ◽  
Care Quality ◽  
Quality Monitoring ◽  
Quality Data ◽  
Usability Study ◽  
Feasibility Testing

291 Background: Most current quality monitoring programs involve retrospective, manual data collection. These are inherently limited by accuracy issues and do not integrate well with national efforts to integrate electronic data documentation in all parts of medical practice. We aimed to build and test a prospective system for continuous quality monitoring in palliative care. Methods: Within a four-organization, academic/community quality consortium, we first conducted a focus group to inventory characteristics of an effective system. Then, with an interdisciplinary team of providers informatics, data security, and software programmers, we created an electronic solution for quality data collection and reporting. A usability study with think-aloud protocols followed using twenty providers and two mock cases across paper, laptop, and tablet computer platforms. Finally, a feasibility test assessing satisfaction, burden, and logistical issues was conducted. Results: Identified priorities for a proposed system were: 1. Use of information technology (IT); 2. Point-of-care use; and 3. Immediate, provider-level reporting on quality conformance. A previous systematic review of quality measures informed the development of a 92 item dataset comprised of variables drawn from validated clinical instruments and aligned with the National Consensus Project quality domains. To foster electronic, point-of-care data capture, the Quality Data Collection Tool (QDACT) user interface was then developed. Use at point-of-care in community-based palliative care settings can inform 82% (125) of identified relevant quality measures; a color-code reminder system provides immediate conformance feedback. The usability study demonstrated high satisfaction with electronic platforms, less than 15 minutes for completion, and a low error rate. Feasibility testing across 572 patient encounters demonstrated high acceptability and further improvements to the user interface. Feedback from an additional cycle of feasibility testing will inform further changes. Conclusions: Electronic systems that can integrate point-of-care quality monitoring and clinical assessments are buildable and usable in palliative care.

Collecting High-Quality Data

2018 ◽  
Author(s):  
Mary Kay Gugerty ◽  
Dean Karlan
Keyword(s):  
Data Collection ◽  
Social Desirability ◽  
Measurement Errors ◽  
Monitoring And Evaluation ◽  
Quality Data ◽  
Social Desirability Bias ◽  
High Quality ◽  
High Quality Data ◽  
Evaluation Systems ◽  
Demand Effect

Without high-quality data, even the best-designed monitoring and evaluation systems will collapse. Chapter 7 introduces some the basics of collecting high-quality data and discusses how to address challenges that frequently arise. High-quality data must be clearly defined and have an indicator that validly and reliably measures the intended concept. The chapter then explains how to avoid common biases and measurement errors like anchoring, social desirability bias, the experimenter demand effect, unclear wording, long recall periods, and translation context. It then guides organizations on how to find indicators, test data collection instruments, manage surveys, and train staff appropriately for data collection and entry.

scholarly journals Improving Specimen Labelling and Data Collection in Bio-science Research using Mobile and Web Applications

2020 ◽  
Vol 10 (1) ◽  
pp. 1-16
Author(s):  
Isaac Nyabisa Oteyo ◽  
Mary Esther Muyoka Toili
Keyword(s):  
Data Collection ◽  
Web Applications ◽  
Data Entry ◽  
Science Research ◽  
Quality Data ◽  
Quality Of Data ◽  
Data Entry Form ◽  
Research Activities ◽  
Daunting Task

AbstractResearchers in bio-sciences are increasingly harnessing technology to improve processes that were traditionally pegged on pen-and-paper and highly manual. The pen-and-paper approach is used mainly to record and capture data from experiment sites. This method is typically slow and prone to errors. Also, bio-science research activities are often undertaken in remote and distributed locations. Timeliness and quality of data collected are essential. The manual method is slow to collect quality data and relay it in a timely manner. Capturing data manually and relaying it in real time is a daunting task. The data collected has to be associated to respective specimens (objects or plants). In this paper, we seek to improve specimen labelling and data collection guided by the following questions; (1) How can data collection in bio-science research be improved? (2) How can specimen labelling be improved in bio-science research activities? We present WebLog, an application that we prototyped to aid researchers generate specimen labels and collect data from experiment sites. We use the application to convert the object (specimen) identifiers into quick response (QR) codes and use them to label the specimens. Once a specimen label is successfully scanned, the application automatically invokes the data entry form. The collected data is immediately sent to the server in electronic form for analysis.

Machine Learning-Assisted Sampling of SERS Substrates Improves Data Collection Efficiency

2021 ◽  
pp. 000370282110345
Author(s):  
Tatu Rojalin ◽  
Dexter Antonio ◽  
Ambarish Kulkarni ◽  
Randy P. Carney
Keyword(s):  
Machine Learning ◽  
Data Collection ◽  
Domain Knowledge ◽  
Collection Efficiency ◽  
Point Of Care ◽  
Automated Analysis ◽  
Downstream Processing ◽  
Machine Learning Algorithms ◽  
Label Free ◽  
Expert User

Surface-enhanced Raman scattering (SERS) is a powerful technique for sensitive label-free analysis of chemical and biological samples. While much recent work has established sophisticated automation routines using machine learning and related artificial intelligence methods, these efforts have largely focused on downstream processing (e.g., classification tasks) of previously collected data. While fully automated analysis pipelines are desirable, current progress is limited by cumbersome and manually intensive sample preparation and data collection steps. Specifically, a typical lab-scale SERS experiment requires the user to evaluate the quality and reliability of the measurement (i.e., the spectra) as the data are being collected. This need for expert user-intuition is a major bottleneck that limits applicability of SERS-based diagnostics for point-of-care clinical applications, where trained spectroscopists are likely unavailable. While application-agnostic numerical approaches (e.g., signal-to-noise thresholding) are useful, there is an urgent need to develop algorithms that leverage expert user intuition and domain knowledge to simplify and accelerate data collection steps. To address this challenge, in this work, we introduce a machine learning-assisted method at the acquisition stage. We tested six common algorithms to measure best performance in the context of spectral quality judgment. For adoption into future automation platforms, we developed an open-source python package tailored for rapid expert user annotation to train machine learning algorithms. We expect that this new approach to use machine learning to assist in data acquisition can serve as a useful building block for point-of-care SERS diagnostic platforms.

scholarly journals NÅR KULTUR SKAL „BEVARES" - perspektiver fra et vestindisk projekt

1996 ◽  
Author(s):  
Karen Fog Olwig
Keyword(s):  
Human Rights ◽  
Indigenous People ◽  
West Indian ◽  
Fourth World ◽  
The West ◽  
Research Project ◽  
Indigenous Status ◽  
Cultural Traditions ◽  
Anthropological Theory ◽  
The Caribbean

Karen Fog Olwig: When culture is to be „preserved“: perspectives from a West Indian research project At the same time as anthropology has begun to apply a more processual perspective to the study of culture as fluid and changing, many of the „fourth world“ peoples studied by anthropologists have become preoccupied with codifying their culture in the form of aboriginal, authentic traditions which can be preserved from change. This concem with cultural traditions is tied to the struggle for human rights by indigenous people. The concept of culture as unchanged traditions is not only in conflict with current anthropological thinking, it is also ill suited to the struggles of peoples who cannot claim this form of ancient indigenous status, but who nevertheless share with „fourth world“ peoples the same need to defend their cultural autonomy. Among this latter group is the people of the Caribbean, who are indigenous to Africa, but came to the islands as part of a process of colonization. This article is based upon a study of the difficulties faced by such a non-indigenous, but nevertheless „native“ community of several centuries standing, in their efforts to defend their cultural and economic autonomy. In the West Indian case modem anthropological theory and the population studied by anthropologists need not be in conflict.

scholarly journals The Efforts of Talang Mamak Indigenous People to Maintain Their Existence in Customary Forest Resources Battle

Society ◽  
2019 ◽  
Vol 7 (1) ◽  
pp. 21-36
Author(s):  
Rizky Octa Putri Charin ◽  
Arief Hidayat
Keyword(s):  
Local Government ◽  
Data Collection ◽  
Indigenous People ◽  
Conflict Of Interest ◽  
Relevant Literature ◽  
Forest Resources ◽  
Violent Conflict ◽  
Private Company ◽  
Qualitative Descriptive ◽  
Descriptive Method

The resources of Customary Forest play an important role for Talang Mamak Indigenous People to survive. The exploitation of the forest by private company and investor has caused a violent conflict. The situation of the indigenous people becomes worsen since local government does not fully protect their rights on the forest.  Even, Local government tends to defend private company and investor in addressing the conflict. Customary forest of Talang Mamak indigenous people is in the oligarchs grip and conflict of interest with their elder. The Indigenous people are in crossroad, to preserve or to release their heritage and right. This study aims to determine the efforts of Talang Mamak Indigenous People to maintain their existence in the customary forest resources battle with private company and investor. This study used qualitative descriptive method. The data collection were documentation analysis and other relevant literature. This study used Theory of Oligarchy (Winters 2011) as grounded theory. The result found that the efforts of the indigenous people to fight for their rights getting weak. Some of them begin to accept compensation from the company and investor, in other word, some of them are willing to release their heritage and right on the forest.

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