What is international collaborative research?
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European Society of Surgical Oncology study on the methodology behind international collaborative research studies including GlobalSurg.
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GlobalSurg Bethune global surgery conference presentation
GlobalSurg is an international research collaboration in global surgery and global health. It was established to represent practising surgeons from around the world and support collaborative international research into surgical outcomes by fostering local, national and international research networks.
In 2017, the National Institute of Health Research (NIHR) Unit on Global Surgery was formed, a consortium between the Universities of Birmingham, Edinburgh and Warwick, together with GlobalSurg international partners.
Our growing network now includes over 5000 clinicians in more than 100 countries. The ethos is inclusive and collaborative: our international cohort studies are open to all collaborators, including medical students, clinical officers, doctors, nurses and researchers.
We run annual research prioritisation events, allowing surgeons from all over world to contribute to the direction of the group.
Our cohort studies aim to give grass-root surgeons the opportunity to participate in major projects. They are designed to ensure easy delivery by local surgeons and will not require extra resources or funding. Every researcher who contributes data into a cohort study will be a Pubmed-citable collaborator on study papers which will be published under one main name – GlobalSurg – to represent our group effort. See our publications page for more information.
Our cohort studies are relevant, prospectively-run, and high quality. The also act to generate questions for future global research studies, including the opportunity for randomised trials.
GlobalSurg global surgery research collaboration - GASOC presentation in Oxford
GlobalSurg was established to represent practising surgeons from around the world and support collaborative international research into surgical outcomes by fostering local, national and international research networks.
Our growing network now includes over 5000 clinicians in more than 100 countries. The ethos is inclusive and collaborative: our international cohort studies are open to all collaborators, including medical students, clinical officers, doctors, nurses and researchers.
We run annual research prioritisation events, allowing surgeons from all over world to contribute to the direction of the group.
Our cohort studies aim to give grass-root surgeons the opportunity to participate in major projects. They are designed to ensure easy delivery by local surgeons and will not require extra resources or funding. Every researcher who contributes data into a cohort study is a Pubmed-citable collaborator on study papers which will be published under one main name – GlobalSurg – to represent our group effort.
Clinical message presentation
The document proposes a platform that collaboratively defines research questions, applies scientific methods to develop evidence-based care plans, measures the impact on population health, and disseminates results locally and globally. It identifies gaps that a matchmaking project could address, such as extracting non-identifiable data to build an outcomes registry and expanding an existing orthopedic registry. The document requests partial funding to develop this platform and address gaps in system architecture, development, marketing, and research support.
New ways to better Healthcare Research
At the DayOne Experts even - Next Generation Clinical Trials, Lars G. Hemkens from University Hospital Basel shared his experience on how integrating data, that has been collected on a routine basis, into clinical trials will make a difference.
Clinical trials and cohort studies
Presentation by Dr Davina Ghersi, NHMRC, to the 'Unlocking value from publicly funded Clinical Research Data' workshop, cohosted by ARDC and CSIRO at ANU on 6 March 2019.
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AT the DayOne Experts - Next Generation Clinical Trials, Randy Ramin-Wright from Clinerion demonstrated how patient recruitment works in the digital age.
Clinical trials data sharing
Presentation by Prof Lisa Askie, ANZCTR, to the 'Unlocking value from publicly funded Clinical Research Data' workshop, cohosted by ARDC and CSIRO at ANU on 6 March 2019.
Investigator-initiated clinical trials: a community perspective
Presentation by Miranda Cumpston, ACTA, to the 'Unlocking value from publicly funded Clinical Research Data' workshop, cohosted by ARDC and CSIRO at ANU on 6 March 2019.
Recommended
GlobalSurg Bethune global surgery conference presentation
GlobalSurg is an international research collaboration in global surgery and global health. It was established to represent practising surgeons from around the world and support collaborative international research into surgical outcomes by fostering local, national and international research networks.
In 2017, the National Institute of Health Research (NIHR) Unit on Global Surgery was formed, a consortium between the Universities of Birmingham, Edinburgh and Warwick, together with GlobalSurg international partners.
Our growing network now includes over 5000 clinicians in more than 100 countries. The ethos is inclusive and collaborative: our international cohort studies are open to all collaborators, including medical students, clinical officers, doctors, nurses and researchers.
We run annual research prioritisation events, allowing surgeons from all over world to contribute to the direction of the group.
Our cohort studies aim to give grass-root surgeons the opportunity to participate in major projects. They are designed to ensure easy delivery by local surgeons and will not require extra resources or funding. Every researcher who contributes data into a cohort study will be a Pubmed-citable collaborator on study papers which will be published under one main name – GlobalSurg – to represent our group effort. See our publications page for more information.
Our cohort studies are relevant, prospectively-run, and high quality. The also act to generate questions for future global research studies, including the opportunity for randomised trials.
GlobalSurg global surgery research collaboration - GASOC presentation in Oxford
GlobalSurg was established to represent practising surgeons from around the world and support collaborative international research into surgical outcomes by fostering local, national and international research networks.
Our growing network now includes over 5000 clinicians in more than 100 countries. The ethos is inclusive and collaborative: our international cohort studies are open to all collaborators, including medical students, clinical officers, doctors, nurses and researchers.
We run annual research prioritisation events, allowing surgeons from all over world to contribute to the direction of the group.
Our cohort studies aim to give grass-root surgeons the opportunity to participate in major projects. They are designed to ensure easy delivery by local surgeons and will not require extra resources or funding. Every researcher who contributes data into a cohort study is a Pubmed-citable collaborator on study papers which will be published under one main name – GlobalSurg – to represent our group effort.
Clinical message presentation
The document proposes a platform that collaboratively defines research questions, applies scientific methods to develop evidence-based care plans, measures the impact on population health, and disseminates results locally and globally. It identifies gaps that a matchmaking project could address, such as extracting non-identifiable data to build an outcomes registry and expanding an existing orthopedic registry. The document requests partial funding to develop this platform and address gaps in system architecture, development, marketing, and research support.
New ways to better Healthcare Research
At the DayOne Experts even - Next Generation Clinical Trials, Lars G. Hemkens from University Hospital Basel shared his experience on how integrating data, that has been collected on a routine basis, into clinical trials will make a difference.
Clinical trials and cohort studies
Presentation by Dr Davina Ghersi, NHMRC, to the 'Unlocking value from publicly funded Clinical Research Data' workshop, cohosted by ARDC and CSIRO at ANU on 6 March 2019.
Patient Centricity: EHR Pillars to Patient Centricity
AT the DayOne Experts - Next Generation Clinical Trials, Randy Ramin-Wright from Clinerion demonstrated how patient recruitment works in the digital age.
Clinical trials data sharing
Presentation by Prof Lisa Askie, ANZCTR, to the 'Unlocking value from publicly funded Clinical Research Data' workshop, cohosted by ARDC and CSIRO at ANU on 6 March 2019.
Investigator-initiated clinical trials: a community perspective
Presentation by Miranda Cumpston, ACTA, to the 'Unlocking value from publicly funded Clinical Research Data' workshop, cohosted by ARDC and CSIRO at ANU on 6 March 2019.
GLOBAL HEALTH TRIALS Overview
The Global Health Trials is a free, neutral network of communities of researchers, who are working together to share their knowledge about how to conduct research, so as to facilitate more research around the world and so improve health outcomes. It is for everyone, whatever your job role and wherever you are based, as long as you work in a Low or low-middle income country.
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Find out how the solution enables research scientists and clinicians across Healthcare, Pharma and other Life Sciences organizations to create a comprehensive research platform that empowers high quality decision-making. It provides the building blocks to allow clinical researchers to capture and curate their data, to manage ontologies, and to integrate, search and visualize data from clinical, biobanks and omics data sources.
In this webinar you will see how to:
- improve sample management
- capture Data Provenance
- stratify patient populations
- explore omics data in the context of clinical phenotype
- facilitate a results sharing culture between departments and collaborators
To view the webinar: http://www.idbs.com/en/news-events/list-of-webinars/2014/03/increase-research-efficiency-and-enable-collaboration-with-the-idbs-translational-science-solution/
Brisbane Health-y Data: Queensland Data Linkage Framework
Presentation given by Trisha Johnston and Catherine Taylor at the 'Sharing Health-y Data Workshop: Challenges and Solutions' event co-hosted by ANDS and HISA. Held on Wednesday 16th March 2016 at the Translational Research Institute, Brisbane, Australia.
AMIA 2015 Registries in Accountable Care poster
Registries are important tools for managing patient data in Accountable Care Organizations (ACOs). The document discusses how ACO registries are used to identify patient populations, stratify patients by risk and quality, and support care coordination through tools like dashboards and predictive analytics. Key requirements for ACO registries include using standardized quality measures, incorporating near real-time data from various sources like EHRs and claims, and having a centralized place to share best practices in data management to support population health in this new care model.
Open Access as a Means to Produce High Quality Data
This document discusses open access to research data. It states that open access can produce higher quality data, publications, and usage of data. It also notes that open access can lead to higher recognition for researchers and more transparency. While some scientists view data as proprietary, open access is meant to have a positive impact by allowing other researchers to reproduce and build upon published work. The document advocates for establishing institutional policies and providing support for open access in order to improve scientific quality and maximize the benefits of research.
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Presentation given by the Sax Institute's Gai Moore and Jo-An Atkinson as part of a McMaster Health Forum webinar.
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Event introduction slides by Thomas Brenzikofer.
Read the event report here:https://www.baselarea.swiss/baselarea-swiss/channels/innovation-report/2019/06/on-the-verge-of-being-born-next-generation-clinical-trials.html
Tomasz Sablinski, Founder and CEO of Transparency Life Sciences raised the crunch question of the evening: Which industry is lagging behind the most in terms of digitization? Right, it is the healthcare industry! But who would have expected the usual lamentation of why this is the case; blaming regulatory constraints, scarce innovation culture, or unachievable technology barriers proved wrong. The appetite for change and finding new ways of doing things was too strong among Basel’s Healthcare innovators at the DayOne Expert Session on “Next Generation Digital Trials”.
The idea of the event was to present a holistic view of the current standing in the digitizing clinical trials.
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Convener:
Marcia A. Kean, Chairman, Strategic Initiatives, Feinstein Kean Healthcare
Moderator:
Kevin Davies, Author, “The $1,000 Genome”; Founding Editor, Nature Genetics and Bio-IT World magazine; and Vice President Business Development, American Chemical Society
Speakers:
Amy P. Abernethy, Director, Center for Learning Healthcare (CLHC), Duke Clinical Research Institute
Michael Cantor, Senior Director, Information Strategy and Analytics, World Research Development, Pfizer
Dave King, Founder, Exaptive
Robert McBurney, Chief Executive Officer, Accelerated Cure Project for Multiple Sclerosis
Dietrich Stephan, Founder and Chief Executive Officer, Silicon Valley Biosystems (SV Bio)
Until recently, biomedical research was conducted in small silos, separated by huge cultural and technical walls and inability to exchange data facilely. But the field is now exploding: massive amounts of complex, multi-dimensional clinical, imaging, and genomic data are being collected, aggregated, integrated, analyzed, and shared. The pioneers driving this digital transformation are working in novel collaborations among patients, providers, and scientists. In this session, speakers will showcase multimodal, computational, and analytic tools for biomarker discovery, patient stratification, and intelligent clinical decision solutions; high-speed genome profiling, with algorithms of individual and population profiles, for real-time molecular-based diagnoses of ‘mystery’ diseases; a point-of-care quality monitoring program used by clinicians, in which data are used for important research questions and then transitioned into clinical trials; and collection and aggregation of data and samples from patients with a neurological disease, enabling queries into markers of disease origins and discovery of new therapies.SURE: Helping get the most out of longitudinal data
The document discusses SURE, a secure remote-access computing environment developed by the Sax Institute to facilitate analysis of large longitudinal datasets while maintaining privacy and security. SURE allows approved researchers to access de-identified unit-level data from sources like health registries and surveys within a controlled virtual workspace. Over 170 researchers across several countries are currently using SURE, which supports collaboration and analysis of datasets too large to move. SURE balances researcher access needs with protecting data privacy and custodian responsibilities.
Sally Redman | Early findings from SPIRIT
Professor Sally Redman AM, CEO of the Sax Institute, recently addressed a CIPHER forum to share how the SPIRIT trial is testing a program designed to increase the use of research in policy and programs.
CIPHER, the Centre for Informing Policy in Health with Evidence from Research, is an Australian collaborative research centre managed by the Sax Institute, that is investigating the tools, skills and systems that might contribute to an increased use of research evidence in policy.
For more information visit www.saxinstitute.org.au.
Outcomes research
Outcomes research examines the effects of healthcare treatments and services on individuals and populations. It provides evidence about decisions made in healthcare. The Patient-Centered Outcomes Research Institute (PCORI) funds comparative clinical research focused on outcomes important to patients, with the goal of improving healthcare quality and relevance. The Agency for Healthcare Research and Quality (AHRQ) also funds outcomes research to improve safety and quality, and helps implement research findings into practice. While outcomes research can improve care and patient satisfaction, it also requires significant funding and time, and changing practice based on results can be difficult.
So much evidence
This document discusses evidence-based practice in obstetrics and gynecology. It notes that while there are many systematic reviews, randomized controlled trials, and guidelines available, barriers still exist that prevent clinicians from fully incorporating research evidence into practice. These barriers include a lack of time and interest in research among some clinicians. The document also discusses challenges in determining which study findings are both statistically and clinically significant. It emphasizes that evidence-based practice requires integrating the best available research with clinical expertise and patient preferences. Successful implementation of evidence-based practices requires commitment from leadership, resources, and changes to existing practices.
The U.S. News Rankings: Measuring Systems of Care (Elizabeth Nabel)
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The document discusses metrics that are used to measure the performance of NHS library services. A survey was conducted to understand the types of metrics currently in use. The most commonly reported metrics involved usage data for resources like e-journals and databases, as well as turnaround times for document delivery and literature searches. Cost per download was also widely cited as it can be used to inform decision making and demonstrate value. The variety of metrics indicated that services are looking for ways to show their impact, satisfy stakeholders, and gain insights into user behavior.
Analytics in Action - Health
The document discusses how healthcare organizations are increasingly relying on data analytics and data scientists. It notes that while analytics can help improve patient care and reduce costs, the healthcare industry lags behind other sectors in adopting new technologies and analyzing data due to privacy concerns and differences in prioritizing risks. The document outlines some current uses of analytics including clinical decision support, fraud detection, and personalized treatment plans. It also explores challenges to wider adoption such as establishing standards and gaining access to data.
Health Informatics
This document discusses challenges with the current state of health informatics, including a lack of integration of medical databases, limited availability of patient information, and gaps in standards. It proposes that next generation health informatics could address these issues by providing accurate and private patient information across all levels of care in a timely manner through approaches that are interdisciplinary, cost effective, and focus on research, education, collaboration, and personalized healthcare.
Biologics Registry Project
RMEC is a non-profit organization that provides opportunities for medical professionals and industry to collaborate through case registries to improve healthcare delivery and advance evidence-based medicine. A registry platform hosted by Syndicom allows multi-site data collection on osteo-biologics used to treat patients, making outcomes data easily accessible and enabling understanding of biologic efficacy in different settings. This advances evidence-based practice and allows innovation based on real-world data.
Prioritization survey results: 2017
An online survey of IPPOSI members was conducted from December 2016 to January 2017 to determine priorities for 2017-2018. Of the 71 responses received, most identified as IPPOSI members and represented patients, researchers, medical professionals, or companies. The survey results will help IPPOSI focus on its strategic priorities of advocating for improved patient access to healthcare innovation, promoting meaningful patient involvement in research and policy, and building its brand and consensus.
iHT² Health IT Summit Seattle 2013 - Josephine Briggs, MD, National Center fo...
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Director
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Opening Keynote "Research in an IT Connected World: Building Better Partnerships – NIH and Health Care Systems"
The era of ‘Big Data’ has arrived for biomedical research, bringing with it immense challenges as well as spectacular opportunities. NIH is establishing major programs with the potential to transform the future of US biomedical research by building the capacities necessary for these challenges. These programs will strengthen research partnerships with health care systems and the IT networks that support them.
The Big Data to Knowledge (BD2K) initiative, to be launched in 2014, will implement a set of recommendations from the Data and Informatics Working Group to the Advisory Committee to the Director. Investments are planned to meet scientific needs to manage and utilize large complex datasets, including strengthening training, and investing in improved analysis methods and software development and dissemination. NIH is also evaluating strengthening data and software sharing policies, and the potential creation of catalogs of research data, and data/metadata standards.
The Common Fund’s Health Care Systems (HCS) Research Collaboratory program has the goal to strengthen the national capacity to implement cost-effective large-scale research studies by engaging major health care delivery organizations as research partners. The aim of the program is to provide a framework of implementation methods and best practices that will enable the participation of many health care systems in clinical research. Research conducted in partnership with health care systems is essential to strengthen the relevance of research results to health practice. Seven demonstration projects, currently in a feasibility phase, are developing detailed methods to implement rigorous randomized studies of questions of major public health impact. These studies, and the IT infrastructure that will make them possible, will be described in detail.
Integration of Clinical Trial Systems: Enhancing Collaboration and Efficiency
Clinical trials are complex endeavors that involve numerous stakeholders, vast datasets, and intricate processes. To streamline operations, enhance collaboration, and improve efficiency, the integration of clinical trial systems has emerged as a pivotal solution. This strategic approach involves connecting various components, such as electronic data capture (EDC) systems, clinical trial management systems (CTMS), and electronic health records (EHR), fostering a cohesive ecosystem that accelerates the pace of research and ensures data accuracy.
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The Global Health Trials is a free, neutral network of communities of researchers, who are working together to share their knowledge about how to conduct research, so as to facilitate more research around the world and so improve health outcomes. It is for everyone, whatever your job role and wherever you are based, as long as you work in a Low or low-middle income country.
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Webinar: Increase research efficiency and enable collaboration with the IDBS ...
Streamline patient stratification together with omics and sample management
Find out how the solution enables research scientists and clinicians across Healthcare, Pharma and other Life Sciences organizations to create a comprehensive research platform that empowers high quality decision-making. It provides the building blocks to allow clinical researchers to capture and curate their data, to manage ontologies, and to integrate, search and visualize data from clinical, biobanks and omics data sources.
In this webinar you will see how to:
- improve sample management
- capture Data Provenance
- stratify patient populations
- explore omics data in the context of clinical phenotype
- facilitate a results sharing culture between departments and collaborators
To view the webinar: http://www.idbs.com/en/news-events/list-of-webinars/2014/03/increase-research-efficiency-and-enable-collaboration-with-the-idbs-translational-science-solution/
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Open Access as a Means to Produce High Quality Data
This document discusses open access to research data. It states that open access can produce higher quality data, publications, and usage of data. It also notes that open access can lead to higher recognition for researchers and more transparency. While some scientists view data as proprietary, open access is meant to have a positive impact by allowing other researchers to reproduce and build upon published work. The document advocates for establishing institutional policies and providing support for open access in order to improve scientific quality and maximize the benefits of research.
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FasterCures' Kristin Schneeman provides an overview of the organization's TRAIN initiative at the Life Raft Group's annual meeting.
Knowledge synthesis for policy and practice
Presentation given by the Sax Institute's Gai Moore and Jo-An Atkinson as part of a McMaster Health Forum webinar.
DayOne Experts - Next generation clinical trials
Event introduction slides by Thomas Brenzikofer.
Read the event report here:https://www.baselarea.swiss/baselarea-swiss/channels/innovation-report/2019/06/on-the-verge-of-being-born-next-generation-clinical-trials.html
Tomasz Sablinski, Founder and CEO of Transparency Life Sciences raised the crunch question of the evening: Which industry is lagging behind the most in terms of digitization? Right, it is the healthcare industry! But who would have expected the usual lamentation of why this is the case; blaming regulatory constraints, scarce innovation culture, or unachievable technology barriers proved wrong. The appetite for change and finding new ways of doing things was too strong among Basel’s Healthcare innovators at the DayOne Expert Session on “Next Generation Digital Trials”.
The idea of the event was to present a holistic view of the current standing in the digitizing clinical trials.
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Convener:
Marcia A. Kean, Chairman, Strategic Initiatives, Feinstein Kean Healthcare
Moderator:
Kevin Davies, Author, “The $1,000 Genome”; Founding Editor, Nature Genetics and Bio-IT World magazine; and Vice President Business Development, American Chemical Society
Speakers:
Amy P. Abernethy, Director, Center for Learning Healthcare (CLHC), Duke Clinical Research Institute
Michael Cantor, Senior Director, Information Strategy and Analytics, World Research Development, Pfizer
Dave King, Founder, Exaptive
Robert McBurney, Chief Executive Officer, Accelerated Cure Project for Multiple Sclerosis
Dietrich Stephan, Founder and Chief Executive Officer, Silicon Valley Biosystems (SV Bio)
Until recently, biomedical research was conducted in small silos, separated by huge cultural and technical walls and inability to exchange data facilely. But the field is now exploding: massive amounts of complex, multi-dimensional clinical, imaging, and genomic data are being collected, aggregated, integrated, analyzed, and shared. The pioneers driving this digital transformation are working in novel collaborations among patients, providers, and scientists. In this session, speakers will showcase multimodal, computational, and analytic tools for biomarker discovery, patient stratification, and intelligent clinical decision solutions; high-speed genome profiling, with algorithms of individual and population profiles, for real-time molecular-based diagnoses of ‘mystery’ diseases; a point-of-care quality monitoring program used by clinicians, in which data are used for important research questions and then transitioned into clinical trials; and collection and aggregation of data and samples from patients with a neurological disease, enabling queries into markers of disease origins and discovery of new therapies.SURE: Helping get the most out of longitudinal data
The document discusses SURE, a secure remote-access computing environment developed by the Sax Institute to facilitate analysis of large longitudinal datasets while maintaining privacy and security. SURE allows approved researchers to access de-identified unit-level data from sources like health registries and surveys within a controlled virtual workspace. Over 170 researchers across several countries are currently using SURE, which supports collaboration and analysis of datasets too large to move. SURE balances researcher access needs with protecting data privacy and custodian responsibilities.
Sally Redman | Early findings from SPIRIT
Professor Sally Redman AM, CEO of the Sax Institute, recently addressed a CIPHER forum to share how the SPIRIT trial is testing a program designed to increase the use of research in policy and programs.
CIPHER, the Centre for Informing Policy in Health with Evidence from Research, is an Australian collaborative research centre managed by the Sax Institute, that is investigating the tools, skills and systems that might contribute to an increased use of research evidence in policy.
For more information visit www.saxinstitute.org.au.
Outcomes research
Outcomes research examines the effects of healthcare treatments and services on individuals and populations. It provides evidence about decisions made in healthcare. The Patient-Centered Outcomes Research Institute (PCORI) funds comparative clinical research focused on outcomes important to patients, with the goal of improving healthcare quality and relevance. The Agency for Healthcare Research and Quality (AHRQ) also funds outcomes research to improve safety and quality, and helps implement research findings into practice. While outcomes research can improve care and patient satisfaction, it also requires significant funding and time, and changing practice based on results can be difficult.
So much evidence
This document discusses evidence-based practice in obstetrics and gynecology. It notes that while there are many systematic reviews, randomized controlled trials, and guidelines available, barriers still exist that prevent clinicians from fully incorporating research evidence into practice. These barriers include a lack of time and interest in research among some clinicians. The document also discusses challenges in determining which study findings are both statistically and clinically significant. It emphasizes that evidence-based practice requires integrating the best available research with clinical expertise and patient preferences. Successful implementation of evidence-based practices requires commitment from leadership, resources, and changes to existing practices.
The U.S. News Rankings: Measuring Systems of Care (Elizabeth Nabel)
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Considering metrics for NHS Library Services
The document discusses metrics that are used to measure the performance of NHS library services. A survey was conducted to understand the types of metrics currently in use. The most commonly reported metrics involved usage data for resources like e-journals and databases, as well as turnaround times for document delivery and literature searches. Cost per download was also widely cited as it can be used to inform decision making and demonstrate value. The variety of metrics indicated that services are looking for ways to show their impact, satisfy stakeholders, and gain insights into user behavior.
Analytics in Action - Health
The document discusses how healthcare organizations are increasingly relying on data analytics and data scientists. It notes that while analytics can help improve patient care and reduce costs, the healthcare industry lags behind other sectors in adopting new technologies and analyzing data due to privacy concerns and differences in prioritizing risks. The document outlines some current uses of analytics including clinical decision support, fraud detection, and personalized treatment plans. It also explores challenges to wider adoption such as establishing standards and gaining access to data.
Health Informatics
This document discusses challenges with the current state of health informatics, including a lack of integration of medical databases, limited availability of patient information, and gaps in standards. It proposes that next generation health informatics could address these issues by providing accurate and private patient information across all levels of care in a timely manner through approaches that are interdisciplinary, cost effective, and focus on research, education, collaboration, and personalized healthcare.
Biologics Registry Project
RMEC is a non-profit organization that provides opportunities for medical professionals and industry to collaborate through case registries to improve healthcare delivery and advance evidence-based medicine. A registry platform hosted by Syndicom allows multi-site data collection on osteo-biologics used to treat patients, making outcomes data easily accessible and enabling understanding of biologic efficacy in different settings. This advances evidence-based practice and allows innovation based on real-world data.
Prioritization survey results: 2017
An online survey of IPPOSI members was conducted from December 2016 to January 2017 to determine priorities for 2017-2018. Of the 71 responses received, most identified as IPPOSI members and represented patients, researchers, medical professionals, or companies. The survey results will help IPPOSI focus on its strategic priorities of advocating for improved patient access to healthcare innovation, promoting meaningful patient involvement in research and policy, and building its brand and consensus.
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The era of ‘Big Data’ has arrived for biomedical research, bringing with it immense challenges as well as spectacular opportunities. NIH is establishing major programs with the potential to transform the future of US biomedical research by building the capacities necessary for these challenges. These programs will strengthen research partnerships with health care systems and the IT networks that support them.
The Big Data to Knowledge (BD2K) initiative, to be launched in 2014, will implement a set of recommendations from the Data and Informatics Working Group to the Advisory Committee to the Director. Investments are planned to meet scientific needs to manage and utilize large complex datasets, including strengthening training, and investing in improved analysis methods and software development and dissemination. NIH is also evaluating strengthening data and software sharing policies, and the potential creation of catalogs of research data, and data/metadata standards.
The Common Fund’s Health Care Systems (HCS) Research Collaboratory program has the goal to strengthen the national capacity to implement cost-effective large-scale research studies by engaging major health care delivery organizations as research partners. The aim of the program is to provide a framework of implementation methods and best practices that will enable the participation of many health care systems in clinical research. Research conducted in partnership with health care systems is essential to strengthen the relevance of research results to health practice. Seven demonstration projects, currently in a feasibility phase, are developing detailed methods to implement rigorous randomized studies of questions of major public health impact. These studies, and the IT infrastructure that will make them possible, will be described in detail.
Integration of Clinical Trial Systems: Enhancing Collaboration and Efficiency
Clinical trials are complex endeavors that involve numerous stakeholders, vast datasets, and intricate processes. To streamline operations, enhance collaboration, and improve efficiency, the integration of clinical trial systems has emerged as a pivotal solution. This strategic approach involves connecting various components, such as electronic data capture (EDC) systems, clinical trial management systems (CTMS), and electronic health records (EHR), fostering a cohesive ecosystem that accelerates the pace of research and ensures data accuracy.
National Workshop to Advance Use of Electronic Data
The webinar slide presentations from the July 2-3, 2012 National Workshop to Advance Use of Electronic Data.
A Successful Academic Medical Center Must be a Truly Digital Enterprise
This document discusses how academic medical centers must become truly digital enterprises to succeed in the future. It outlines how data sharing and use of data analytics will become increasingly important in biomedical research. Academic medical centers will need to improve efficiency, embrace open collaboration, and ensure current training prepares researchers for working with large, diverse data sources. However, balancing accessibility and security of data will also be critical as these digital transformations occur. The implications discussed could shape opportunities, scientific practices, and the value of data and analytics for academic medical institutions.
Decentralized Monitoring in Clinical Trials
Decentralized monitoring in clinical trials refers to a modern approach to monitoring the progress, safety, and data integrity of clinical trials using remote and technology-driven methods. Traditional clinical trial monitoring involves frequent on-site visits by monitors to ensure that the trial is conducted according to the protocol and regulatory requirements. However, this approach can be resource-intensive, time-consuming, and may not always provide real-time insights.
Decentralized monitoring leverages technology, data analytics, and remote communication tools to monitor various aspects of clinical trials. Here are some key components of decentralized monitoring:
Pistoia Alliance European Conference 2015 - Julia Wilson / Global Alliance fo...
The document discusses the challenge of unlocking the potential of the unparalleled generation of human genomic and genetic data in a way that allows global data sharing. It introduces the Global Alliance for Genomics and Health, an international organization working to catalyze responsible data sharing through establishing interoperable standards and approaches. Key activities of the Global Alliance include several data sharing projects and working groups focused on clinical data, data representation, and ethics. The document encourages further international collaboration and participation to realize the benefits of genomic data sharing.
Lessons from the UK: Data access, patient trust & real-world impact with heal...
HDR UK is facilitating health data access in the UK for researchers through The Innovation Gateway. This allows researchers to discover and access de-identified health data from various custodians. HDR UK has emphasized transparency and patient/public involvement. During the COVID-19 pandemic, HDR UK coordinated data-driven research efforts and accelerated data access to support priority studies. This included enabling a clinical trial to more rapidly recruit participants using daily COVID test results. HDR UK is also laying the foundations for an international health data alliance to support open COVID-19 research globally.
The power of a digital thread in life sciences
This document discusses how a digital thread can help accelerate drug development and manufacturing processes in the life sciences industry. It highlights how orthodoxies around discovery, clinical trials, and manufacturing have been dispelled due to COVID-19. A digital solution is proposed to create better collaboration and faster decision making across R&D and manufacturing. An example is provided of how a biopharma client leveraged existing IT platforms to create a digital product profile and digitize manufacturing controls, reducing tech transfer efforts by over 20%. The benefits of the digital thread include rapid drug discovery, smart manufacturing, holistic data views, and treatments reaching more patients faster.
Clinical Research Informatics Year-in-Review 2024
Peter Embi, MD's presentation of Clinical Research Informatics year-in-review presented at the 2024 AMIA Informatics Summit in Boston, MA on March 20, 2024.
PCORI: Engaging Patients in Clinical Trials & Outcomes Research
Overview of the Patient-Centered Outcomes Research Institute (PCORI), how PCORI views Patient-Centered Outcomes Research and how this is related to PCORI’s major funding mechanisms.
A Vision for a National Research Network
The document discusses the vision for a National Patient-Centered Research Network that would help address challenges with clinical research. It would bring together 20-30 million people with diverse characteristics and broad consent for research using their electronic health records over many years. This would allow for more efficient observational studies and randomized trials on topics like mobile health applications, low back pain treatments, and large-scale pharmacogenomics. The network could significantly reduce research costs and help engage more of the public in medical research. Now is a good time to pursue this vision as electronic health records are more widely used and opportunities for clinical questions are greater.
NCI Cancer Genomics, Open Science and PMI: FAIR
Talk given to the NLM Fellows on July 8, 2016. Touches on Cancer Genomics, Open Science and PMI: FAIR in NCI genomics thinking and projects. Includes discussion of the Genomic Data Commons (GDC), Cancer Data Ecosystem, Data sharing, and the NCI cancer clinical trials open API.
Challenges and Opportunities in Conducting Multi Centre Clinical Trials
Conducting multi centre clinical trials presents both challenges and opportunities that significantly impact the advancement of medical research and patient care. This article explores the complex landscape of multi centre trials, highlighting the various hurdles faced by researchers and the potential benefits that can be harnessed. Challenges encompass diverse regulatory environments, logistical intricacies, and communication disparities across different sites. Harmonizing protocols, ensuring consistent data collection, and addressing ethical considerations emerge as critical obstacles. Despite these challenges, multi centre trials offer a range of opportunities, including enhanced diversity in patient populations, increased statistical power, and the potential for generalized findings. Collaborative efforts fostered through multi centre trials contribute to a broader understanding of interventions and therapies, ultimately shaping evidence based medical practices. By addressing challenges and capitalizing on opportunities, the medical research community can maximize the impact of multi centre clinical trials on patient outcomes and healthcare advancements. Deepika Thammineni | Manisha Shinde "Challenges and Opportunities in Conducting Multi-Centre Clinical Trials" Published in International Journal of Trend in Scientific Research and Development (ijtsrd), ISSN: 2456-6470, Volume-7 | Issue-4, August 2023, URL: https://www.ijtsrd.com/papers/ijtsrd59799.pdf Paper Url:https://www.ijtsrd.com/other-scientific-research-area/other/59799/challenges-and-opportunities-in-conducting-multicentre-clinical-trials/deepika-thammineni
Virtual clinical trials
Virtual clinical trials utilize emerging technologies like mobile apps, remote monitoring devices, and online platforms to conduct clinical trials remotely with participants in their homes. This allows trials to have more convenient participation, potentially improving enrollment, retention, and compliance. However, virtual trials also face challenges like developing patient trust in internet-based data collection and ensuring appropriate populations are selected. Early case studies provided lessons about balancing technology with human support. Overall, virtual trials may become a more important model as patients expect remote participation options and for certain study types and populations.
Improving health care outcomes with responsible data science
Keynote presentation by Wessel Kraaij at the Dutch pattern recognition and impage processing society (NVPBV) 29/5/2018, Eindhoven.
This talk discusses
1. trends in health care and respondible data science and their intersection
2. Secure federated analytics on distributed data repositories
3. Generating clinically relevant hypotheses from patient forum discussions.
PCORnet: Building Evidence through Innovation and Collaboration
PCORnet: Building Evidence through Innovation and CollaborationPatient-Centered Outcomes Research Institute
Slide presentation from Day Two of the PCORnet Partners meeting. The January 21-2, 2014 meeting took place at the Brookings Institute. This event launched the development of the nation’s most ambitious and promising clinical research network aimed at delivering high quality care through patient-centered outcomes research. Accelerating Clinical Trials trough Multi-Stakeholder Collaborations
This conference offers delegates an in-depth view of the latest initiatives that are simplifying and improving the clinical trial experience for the patient through data-sharing and setting industry standards. Leading individuals from biopharma partnerships and consortia come together to share the results and impact of their projects, as well as insights on areas ripe for future collaboration. The conference provides delegates with opportunities to learn from one another in regard to what works now and a forum to discuss how to leverage and build on collective experiences to advance innovation across the wider community.
We discuss:
Responsible Clinical Trials Data Sharing – Protecting Intellectual Property While Enabling Public Access to Data.
The Project Data Sphere Initiative – A New Data Sharing and Analytics Model for Cancer Research.
Clinical Trials Transformation Initiative – Advancing Central IRBs, IND Safety and a Quality by Design Approach to Clinical Trial Operations.
Lessons Learned from Pilot Studies on Risk-Based Monitoring Methodology to Identify Risk and Ensure Data Quality.
A Model to Create, Share, and Re-Use Structured Content throughout the Clinical Trial Life Cycle – The Sanofi-TransCelerate Collaboration.
CISCRP Recommendations – Communicate Trial Results to Participants to Improve Experience and Build Support for the Clinical Research Enterprise.
http://www.worldcongress.com/events/PB14014/
Evaluating research consortium
This presentation was made at a large pharmaceutical company's R&D and corporate affairs campus - going a little more indepth than the one from the prior Science of Team Science Conference
Samantha Robertson - NHMRC Perspectives on Increasing Access to Data from Pub...
Governments and industries all over the world are tackling the challenges and opportunities of ‘Big Data’. In view of these challenges, the key drivers of change in this area are the behaviour of researchers, the introduction of incentives or rewards and funding for data sharing infrastructure. Governments and taxpayers also expect a return on investment from the money spent on publically funded research. Building on and learning from the successes (and failures) of others need to be part of the research vernacular. Issues such as open access, data curation, handling of data, and sharing of that data are all matters on which the National Health and Medical Research Council (NHMRC) has an interest in. NHMRC works with the sector to develop best practise policies on such matters.
Samantha Robertson
Executive Director, NHMRC Evidence, Advice & Governance
Presented at the 2015 Wiley Publishing Seminar, 5 November, Melbourne, Australia.
Medical research:-rebuilt,-retooled -and -rebooted ppt
Medical Research: Rebuilt, Retooled and Rebooted An early stage mobile medical device company developing a human-centered suite of consumer products using science and technology to empower everyday people to monitor and better understand their own health—anytime, anywhere.
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iHT² Health IT Summit Seattle 2013 - Josephine Briggs, MD, National Center fo...
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Integration of Clinical Trial Systems: Enhancing Collaboration and Efficiency
Integration of Clinical Trial Systems: Enhancing Collaboration and Efficiency
National Workshop to Advance Use of Electronic Data
National Workshop to Advance Use of Electronic Data
A Successful Academic Medical Center Must be a Truly Digital Enterprise
A Successful Academic Medical Center Must be a Truly Digital Enterprise
Pistoia Alliance European Conference 2015 - Julia Wilson / Global Alliance fo...
Pistoia Alliance European Conference 2015 - Julia Wilson / Global Alliance fo...
Lessons from the UK: Data access, patient trust & real-world impact with heal...
Lessons from the UK: Data access, patient trust & real-world impact with heal...
PCORI: Engaging Patients in Clinical Trials & Outcomes Research
PCORI: Engaging Patients in Clinical Trials & Outcomes Research
Challenges and Opportunities in Conducting Multi Centre Clinical Trials
Challenges and Opportunities in Conducting Multi Centre Clinical Trials
Improving health care outcomes with responsible data science
Improving health care outcomes with responsible data science
PCORnet: Building Evidence through Innovation and Collaboration
PCORnet: Building Evidence through Innovation and Collaboration
Accelerating Clinical Trials trough Multi-Stakeholder Collaborations
Accelerating Clinical Trials trough Multi-Stakeholder Collaborations
Samantha Robertson - NHMRC Perspectives on Increasing Access to Data from Pub...
Samantha Robertson - NHMRC Perspectives on Increasing Access to Data from Pub...
Medical research:-rebuilt,-retooled -and -rebooted ppt
Medical research:-rebuilt,-retooled -and -rebooted ppt
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Hospital management and service improvement presentation - low and middle inc...Dr Edward Fitzgerald
Hospital management and service improvement presentation - low and middle income countries:
Discuss the basic principles of health system and hospital management.
Describe how management quality is measured and linked to system performance and outcome.
Outline specific aspects of hospital management relevant to LMIC health systems and hospitals.Changing Behaviour in the Operating Theatre - GlobalSurg Implementation prese...
Changing Behaviour in the Operating Theatre - GlobalSurg Implementation prese...Dr Edward Fitzgerald
Changing Behaviour in the Operating Theatre - GlobalSurg Implementation presentation for global surgery planning meeting in South AfricaQuality and safety in global surgery and healthcare conference presentation
The document discusses quality and safety in global surgery. It notes that around 8.2% of patient records in developing countries show adverse events, 83% of which are preventable and 30% associated with death. Checklist implementation in surgery across 8 countries, including India and Tanzania, reduced mortality by nearly half and complications by a third. Lifebox is a nonprofit working to address unsafe surgery globally by providing equipment and training, including introducing safety checks in low and middle-income countries.
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Laparostomy Management with ABThera™
Case Experience: ABThera™ Open Abdomen Negative Pressure Therapy System in a Grade IV Open Abdomen Secondary to Acute PancreatitisControversies in diverticular disease and diverticulitis conference presentation
Controversies in diverticular disease and diverticulitis conference presentationDr Edward Fitzgerald
This document discusses several controversies and areas of ongoing debate in the treatment of diverticular disease. It summarizes recent evidence questioning traditional practices like routine antibiotics for uncomplicated diverticulitis, prophylactic resection after a single attack, and the natural history assumptions of disease progression. The role of laparoscopic versus open surgery and conservative management of complicated diverticulitis are also addressed. Overall, the treatment paradigm is shifting to a more conservative approach with many prior standards now being re-examined based on emerging evidence.Checklists, Never Events, and Lifebox Foundation
Presentation to the Royal College of Anesthetists, Checklists, never events, and the Lifebox Foundation
How to write an abstract
To understand why a study abstract is important to scientific communication.
To understand the process by which abstracts are selected for presentation at scientific conferences.
To learn the features which unite successful abstract submissions.
Delivering Foundation Skills in Surgery course in Rwanda - presentation ASiT ...
Delivering Foundation Skills in Surgery course in Rwanda - presentation ASiT ...Dr Edward Fitzgerald
Evaluation of surgical skills training in resource poor settings - ASiT 'Foundation Skills in Surgery' course in Rwanda. Association of Surgeons in Training.How to get involved in audit and research
This document provides information and advice about getting involved in medical research and audit as a medical student. It discusses why participation is important according to the GMC, as well as the real benefits which include developing evidence-based practice and gaining useful skills. However, it notes there are also barriers like lack of time, supportive supervisors, and clear projects. The document provides tips on getting started, such as collaborating with partners, having a plan, and not giving up when facing rejection. It also suggests ways medical schools could better foster and support student participation in research.
STARSurg - student audit and research collaboration presentation
STARSurg is a student-led collaborative that empowers medical students to participate in national research studies related to surgery. It facilitates annual research projects involving over 1000 collaborators across multiple medical schools. Participating students gain transferable skills in research, audit, and evidence-based practice while making meaningful contributions through studies published in top journals. STARSurg aims to promote a culture of student engagement in research through training, online resources, and recognition of student work.
Social media in surgery - Collaboratives, colleagues and campaigns, ESCP conf...
Social media in surgery - Collaboratives, colleagues and campaigns, ESCP conf...Dr Edward Fitzgerald
This document discusses how social media can be used to connect surgical trainees, promote peer support and education, engage in medico-political issues, and stay updated on society and organizational matters. It provides examples of hashtags and Twitter handles related to surgery. Social media also enables collaboration on audit and research projects, including a global study on surgical outcomes from over 10,000 patients at 357 hospitals in 58 countries. The study found mortality was three times higher in low human development index countries. Overall, the document advocates for the use of social media in surgery to facilitate international collaboration and high impact studies.More from Dr Edward Fitzgerald (11)
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Changing Behaviour in the Operating Theatre - GlobalSurg Implementation prese...
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What is international collaborative research?
- 1. International collaborative surgical studies Dr Edward Fitzgerald @DrEdFitzgerald
- 3. What is collaborative research? Meritocratic group authorship Building global networks Snap-shot methodology Align projects to clinical needs Any hospital, any where High-quality, protocol-led Empowering grass-roots surgeons Building research capacity Prospective, bedside-level patient data Large-scale participatory research
- 4. What it is (and what it isn’t) EFFICIENT EFFECTIVE ECONOMICAL Protocol-led, core data set, snap-shot methodology Global penetrance, rapid completion and turn-around Minimal financial support, own time, low burden
- 5. How is it delivered? Peer reviewed protocol disseminated globally Collaborator registration online Country leads coordinate Complete online training module Online central support and troubleshooting 14-day snapshot data collection within 6-month window for participation Online data upload and central analysis
- 8. Mortality 3 x higher in low- compared with high-HDI countries Collaboration Driven High-Impact Results GlobalSurg Collaborative. BJS 2016; 103: 971–988 10,745 patients357 hospitals 58 countries
- 12. v
- 14. • Website: www.globalsurg.org • Email: enquiry@globalsurg.org • Twitter: @GlobalSurg @DrEdFitzgerald jeffitzgerald@gmail.com Thank you