Anonymising quantitative data
Dr Sharon Bolton
UK Data Service
UK Data Archive, University of Essex
Anonymising Research Data workshop
Dublin, 22 June 2016
These are the slides from the Work Smarter Together event run on 23 October 2019.
If you download them you'll get to see the slide transitions and speaker notes which do not show in SlideShare (as least not that I know how to make it happen).
Michael
Anonymisation and Social Research
Ruth Geraghty
Data Curator on the CRNINI-PEI Research Initiative
Children’s Research Network for Ireland and Northern Ireland
Anonymising Research Data workshop, University College Dublin, 22nd June 2016
www.childrensresearchnetwork.org
This document summarizes a workshop on preparing and curating research data from the Prevention and Early Intervention Initiative (PEII) in Ireland. It describes several data collections that were generated from evaluations of PEII programs, including the Preparing for Life (PFL) study, the Children's Profile at School Entry (CPSE) study, and others. The PFL study involved home visiting and supports for families from pregnancy to age 4, while the CPSE study collected data on school readiness for junior infants. Both studies used mixed methods and longitudinal designs. The document outlines the process of preparing, anonymizing, and curating these datasets so they can be safely and ethically archived and reused.
This document summarizes research on incentives for researchers to share their data. It discusses findings from qualitative interviews and quantitative surveys. Key findings include:
- Individual researchers are motivated by benefits to their own research, career, and discipline's norms. They are influenced by funder and journal policies.
- Institutional supports like data infrastructure, funding, and training also influence researchers' data sharing practices. Funder requirements and assistance with data management increase sharing.
- Studies found the main individual motivations are career benefits and research impact. The main institutional factors are skills training, support services, and policies that ensure proper data reuse and acknowledgement.
This document provides an overview of a hands-on session on accessing and working with data from the Preparing for Life (PFL) collection. The session includes a presentation on the PFL evaluation and intervention, followed by a guided session exploring subsets of archived PFL data using SPSS. Attendees are introduced to the domains examined in the PFL study and shown samples of de-identified data from the baseline, 12-month, 24-month, and 48-month waves of data collection. Guidance is provided on opening and navigating the data files, merging files, and exploring demographic and health-related variables.
The document provides information about research grants from the Children's Research Network that aim to further analyze data generated by The Atlantic Philanthropies' Prevention and Early Intervention Initiative (PEII). The grants offer up to €10,000 for secondary analysis of PEII datasets within a six-month period. Applicants must be eligible to live/study in Ireland or the UK and have a relevant graduate degree or academic mentor. Successful grantees will produce a publication or training event highlighting the analyzed data within the grant period. The application deadline is June 22nd.
Australian Research Council (ARC) & National Health and Medical Research Council (NHMRC) overview
Open Data - Whole of Government Approach
ARC and NHMRC Data Management Requirements
Australian Code for the Responsible Conduct of Research
Research Integrity Advisor and Data ManagementARDC
Dr Paul Wong from the Australian Research Data Commons presented at the University of Technology Sydney's RIA Data Management Workshop on 21 June 2018. In partnership with the Australian Research Council, the National Health and Medical Research Council, the Australian Research Data Commons, and RMIT University, this is part of a national workshop series in data management for research integrity advisors.
These are the slides from the Work Smarter Together event run on 23 October 2019.
If you download them you'll get to see the slide transitions and speaker notes which do not show in SlideShare (as least not that I know how to make it happen).
Michael
Anonymisation and Social Research
Ruth Geraghty
Data Curator on the CRNINI-PEI Research Initiative
Children’s Research Network for Ireland and Northern Ireland
Anonymising Research Data workshop, University College Dublin, 22nd June 2016
www.childrensresearchnetwork.org
This document summarizes a workshop on preparing and curating research data from the Prevention and Early Intervention Initiative (PEII) in Ireland. It describes several data collections that were generated from evaluations of PEII programs, including the Preparing for Life (PFL) study, the Children's Profile at School Entry (CPSE) study, and others. The PFL study involved home visiting and supports for families from pregnancy to age 4, while the CPSE study collected data on school readiness for junior infants. Both studies used mixed methods and longitudinal designs. The document outlines the process of preparing, anonymizing, and curating these datasets so they can be safely and ethically archived and reused.
This document summarizes research on incentives for researchers to share their data. It discusses findings from qualitative interviews and quantitative surveys. Key findings include:
- Individual researchers are motivated by benefits to their own research, career, and discipline's norms. They are influenced by funder and journal policies.
- Institutional supports like data infrastructure, funding, and training also influence researchers' data sharing practices. Funder requirements and assistance with data management increase sharing.
- Studies found the main individual motivations are career benefits and research impact. The main institutional factors are skills training, support services, and policies that ensure proper data reuse and acknowledgement.
This document provides an overview of a hands-on session on accessing and working with data from the Preparing for Life (PFL) collection. The session includes a presentation on the PFL evaluation and intervention, followed by a guided session exploring subsets of archived PFL data using SPSS. Attendees are introduced to the domains examined in the PFL study and shown samples of de-identified data from the baseline, 12-month, 24-month, and 48-month waves of data collection. Guidance is provided on opening and navigating the data files, merging files, and exploring demographic and health-related variables.
The document provides information about research grants from the Children's Research Network that aim to further analyze data generated by The Atlantic Philanthropies' Prevention and Early Intervention Initiative (PEII). The grants offer up to €10,000 for secondary analysis of PEII datasets within a six-month period. Applicants must be eligible to live/study in Ireland or the UK and have a relevant graduate degree or academic mentor. Successful grantees will produce a publication or training event highlighting the analyzed data within the grant period. The application deadline is June 22nd.
Australian Research Council (ARC) & National Health and Medical Research Council (NHMRC) overview
Open Data - Whole of Government Approach
ARC and NHMRC Data Management Requirements
Australian Code for the Responsible Conduct of Research
Research Integrity Advisor and Data ManagementARDC
Dr Paul Wong from the Australian Research Data Commons presented at the University of Technology Sydney's RIA Data Management Workshop on 21 June 2018. In partnership with the Australian Research Council, the National Health and Medical Research Council, the Australian Research Data Commons, and RMIT University, this is part of a national workshop series in data management for research integrity advisors.
Principles, key responsibilities, and their intersectionARDC
Dr Daniel Barr from RMIT University presented at the University of Technology Sydney's RIA Data Management Workshop on 21 June 2018. In partnership with the Australian Research Council, the National Health and Medical Research Council, the Australian Research Data Commons, and RMIT University, this is part of a national workshop series in data management for research integrity advisors.
Methodologies for Addressing Privacy and Social Issues in Health Data: A Case...Trilateral Research
Huge quantities of complex and diverse data are generated everyday in healthcare institutions, including clinical documentation (diagnostics, lab data, imaging data, etc.), administrative data, activities and cost data, and R&D data from clinical trials.
Strengthening data sharing for public health: ethical, legal and political is...ExternalEvents
http://www.fao.org/about/meetings/wgs-on-food-safety-management/en/
Strengthening data sharing for public health: ethical, legal and political issues. Presentation from the Technical Meeting on the impact of Whole Genome Sequencing (WGS) on food safety management and GMI-9, 23-25 May 2016, Rome, Italy.
Will Biomedical Research Fundamentally Change in the Era of Big Data?Philip Bourne
This document discusses how biomedical research may fundamentally change in the era of big data. It notes that biomedical research has always been data-driven, but the scope, variety, complexity and volume of data is now much greater. It also discusses the need for more open data sharing and new tools and methods for large-scale analysis. The document suggests biomedical research may move towards a more collaborative "platform" model, as seen with companies like Airbnb, with the goal of improving data access, reuse and reproducibility of research. However, overcoming challenges like incentives, trust and work practices will be important for any new platform to succeed.
2013 DataCite Summer Meeting - Closing Keynote: Building Community Engagement...datacite
2013 DataCite Summer Meeting - Making Research better
DataCite. Co-sponsored by CODATA.
Thursday, 19 September 2013 at 13:00 - Friday, 20 September 2013 at 12:30
Washington, DC. National Academy of Sciences
http://datacite.eventbrite.co.uk/
Justin Withers from the Australian Research Council presented at University of Technology Sydney's RIA Data Management Workshop on 21 June 2018. In partnership with the Australian Research Council, the National Health and Medical Research Council, the Australian Research Data Commons, and RMIT University, this is part of a national workshop series in data management for research integrity advisors.
Why science needs open data – Jisc and CNI conference 10 July 2014Jisc
This document discusses the importance of open data in science. It provides 4 key reasons why open data is important:
1) It allows for identification of patterns in large datasets that could not be found otherwise.
2) It enables data modeling through iterative integration of initial models with observational data.
3) It facilitates deeper integration and analysis of diverse linked datasets.
4) It supports exploitation of networked sensor data through acquisition, integration, analysis and feedback.
However, open data needs to be "intelligently open" through being discoverable, accessible, intelligible, assessable and reusable to realize its full potential. Mandating such intelligent open data is important to drive an open data infrastructure ecology.
Research Data Management Services at UWA (November 2015)Katina Toufexis
Research Data Management Services at the University of Western Australia (November 2015).
Created by Katina Toufexis of the eResearch Support Unit (University Library).
CC-BY
Legal and regulatory challenges to data sharing for clinical genetics and ge...Human Variome Project
There are many factors that impede genomic variant sharing in the UK, despite it becoming a necessary part of clinical care. These include the lack of a designated infrastructure or mechanism aggravated by the complexity of laws that apply, and fragmented and variable advice from local ‘Caldicott guardians’ who guide NHS trusts on their responsibilities concerning data protection and confidentiality. Since the legitimacy of data sharing in the UK is framed in terms of ‘personal data’ being shared for ‘direct care’ (subject to legal exceptions), the blurred boundaries between clinical care and research, and the spectrum of identifiability of data also lead to differing interpretations resulting in inconsistent practices.
In a multidisciplinary collaboration, the PHG Foundation and the UK’s Association for Clinical Genetic Science co-hosted a workshop to examine the clinical necessity for sharing variant data and associated phenotypic information, the technical feasibility and the legal and regulatory impediments to such sharing. Delegates included clinicians, laboratory scientists, and key policy makers, including the National Data Guardian for Health and Care and representatives from the 100,000 Genomes Project, a pioneering research project which promises to build a legacy for future genomics services in the UK. The key finding from our work was that current arrangements for sharing genomic variants within the NHS are unsatisfactory and inconsistent practices are compromising safety and quality. Our workshop report [1] highlights the urgent need for (i) national agreement to optimise sharing within the NHS and develop consensus on the legitimacy of data sharing, (ii) standardised operational processes, including a designated sustainable database or mechanism for sharing, and (iii) strong leadership by the multiple relevant health organisations to demonstrate the benefits and risks associated with sharing and not sharing data.
Since publication of the workshop report, the NHS Consortium (operating within the DECIPHER database) has reported a 120% increase in the number of cases shared, the 100,000 Genomes Project and associated data embassy have got underway and the EU Data Protection Regulation has been finalised. However research highlights continuing public reservations about some aspects of data sharing including commercial access and misgivings around secondary uses of data. Publication of the National Data Guardian’s long-awaited review of consent and security provisions to provide guidance on a new consent and opt-out model for sharing patient information in the NHS, has been delayed pending the results of the EU referendum being known. Against this backdrop, the imperative to develop robust, proportionate policies for genomic data sharing becomes increasingly acute.
Funding from the PHG Foundation and the Association for Clinical Genetic Science.
David B. Resnik MedicReS World Congress 2015MedicReS
Protecting Privacy and Confidentiality in the Age of Big Data Presentation to MedicReS 5th World Congress on October 19,25,2015 in New York - David B. Resnik, JD, PhD, Bioethicist, NIH/NIEHS
The document discusses open data and data sharing, including defining open data, the benefits of open data, overcoming barriers to opening data such as concerns about scooping and sensitive data, best practices for making data open through formats, licensing and description, and the role of research databases and data citation in promoting open data.
Introduction to Research Data Management at UWAKatina Toufexis
This document summarizes the key benefits of research data management. It discusses how research data management helps with compliance by meeting requirements of international and national funding agencies as well as publishers. It also promotes efficiency in the research process, ensures security of data, allows access for validation and collaboration, and improves quality through enabling replication. The document provides an overview of the Research Data Management Toolkit available at UWA to support researchers in managing their data over the research lifecycle.
This document discusses licensing research data for reuse. It begins by providing a scenario where a user has downloaded a dataset but is unsure what they can do with the data due to licensing. It then discusses that licensing is critical to enabling data reuse and citation. It provides information on AusGOAL, the Australian open access and licensing framework, and notes it is recommended for data publishing by ANDS partners. It also includes links to licensing guides and FAQs. In summary, the document emphasizes the importance of data licensing for enabling reuse and outlines Australia's recommended licensing system.
Open science framework – Jeff Spies, Centre for Open Science
Active research from lab to publication – Simon Coles, University of Southampton
Managing active research in the university – Robin Rice, University of Edinburgh
Making research available: FAIR principles and Force 11 - David De Roure, Oxford e-Research Centre
Jisc and CNI conference, 6 July 2016
Clinical Trial Data Transparency: Explaining Governance for Public Data SharingHealth Data Consortium
Watch the webinar here: http://www.screencast.com/t/0lATKYlJ8
Dr. Chris Boone, then-VP in Avalere’s Evidence Translation and Implementation Practice, discussed clinical trial data transparency and considerations for governance and open data sharing. Clinical trials are extremely valuable as the primary data source for seeking regulatory approval of products. Historically, regulatory agencie have been the sole recipients of clinical trial data, butthere has been a recent push from various stakeholder groups to open access to clinical trial data to non-regulatory researchers as an act of ethical responsibility to patients, a contribution to public health, and a demonstrated commitment to advancing the science. Some of the barriers include developing a sound approach for de-identifying patient data, adopting universal clinical trial data format, and managing the proactive and non-selective access and security of clinical data once collected. Dr. Boone discusses rationales and benefits/risks of clinical trial transparency, responsible use of publicly sharing this data, barriers and legal implications, and reasonable data sharing models.
Discover more health data resources on our website at http://www.healthdataconsortium.org/
Accessing data for research: data publishing pathways and the Five SafesLouise Corti
Presented atL Assessing Disclosure Risk in Population Research Data and Outputs, Children of the 90s (ALSPAC)
Bristol Medical School, 24 January 2020.
In this half day session, we introduce the concept of a Safe Health Researcher, where both data producers and users are not only aware of key data legal, ethical and security measures surrounding the management and publication of biomedical research data, but also any risk in outputs they are creating.
The practical training session aimed at aimed at data managers looks at key elements of disclosure risk and trust in sharing biomedical data. We will cover the principles and practicalities of reviewing disclosure risk in numeric data sources and in research outputs.
The art of depositing social science data: maximising quality and ensuring go...Louise Corti
The document provides guidance for depositing data into a research data repository. It discusses incentivizing researchers to share data, developing data policies, reviewing data for quality and disclosure risks, preparing documentation, assigning licenses, and providing support to depositors. The role of the repository manager is to work with depositors to prepare data according to best practices and the repository's standards to ensure long-term preservation and access.
Principles, key responsibilities, and their intersectionARDC
Dr Daniel Barr from RMIT University presented at the University of Technology Sydney's RIA Data Management Workshop on 21 June 2018. In partnership with the Australian Research Council, the National Health and Medical Research Council, the Australian Research Data Commons, and RMIT University, this is part of a national workshop series in data management for research integrity advisors.
Methodologies for Addressing Privacy and Social Issues in Health Data: A Case...Trilateral Research
Huge quantities of complex and diverse data are generated everyday in healthcare institutions, including clinical documentation (diagnostics, lab data, imaging data, etc.), administrative data, activities and cost data, and R&D data from clinical trials.
Strengthening data sharing for public health: ethical, legal and political is...ExternalEvents
http://www.fao.org/about/meetings/wgs-on-food-safety-management/en/
Strengthening data sharing for public health: ethical, legal and political issues. Presentation from the Technical Meeting on the impact of Whole Genome Sequencing (WGS) on food safety management and GMI-9, 23-25 May 2016, Rome, Italy.
Will Biomedical Research Fundamentally Change in the Era of Big Data?Philip Bourne
This document discusses how biomedical research may fundamentally change in the era of big data. It notes that biomedical research has always been data-driven, but the scope, variety, complexity and volume of data is now much greater. It also discusses the need for more open data sharing and new tools and methods for large-scale analysis. The document suggests biomedical research may move towards a more collaborative "platform" model, as seen with companies like Airbnb, with the goal of improving data access, reuse and reproducibility of research. However, overcoming challenges like incentives, trust and work practices will be important for any new platform to succeed.
2013 DataCite Summer Meeting - Closing Keynote: Building Community Engagement...datacite
2013 DataCite Summer Meeting - Making Research better
DataCite. Co-sponsored by CODATA.
Thursday, 19 September 2013 at 13:00 - Friday, 20 September 2013 at 12:30
Washington, DC. National Academy of Sciences
http://datacite.eventbrite.co.uk/
Justin Withers from the Australian Research Council presented at University of Technology Sydney's RIA Data Management Workshop on 21 June 2018. In partnership with the Australian Research Council, the National Health and Medical Research Council, the Australian Research Data Commons, and RMIT University, this is part of a national workshop series in data management for research integrity advisors.
Why science needs open data – Jisc and CNI conference 10 July 2014Jisc
This document discusses the importance of open data in science. It provides 4 key reasons why open data is important:
1) It allows for identification of patterns in large datasets that could not be found otherwise.
2) It enables data modeling through iterative integration of initial models with observational data.
3) It facilitates deeper integration and analysis of diverse linked datasets.
4) It supports exploitation of networked sensor data through acquisition, integration, analysis and feedback.
However, open data needs to be "intelligently open" through being discoverable, accessible, intelligible, assessable and reusable to realize its full potential. Mandating such intelligent open data is important to drive an open data infrastructure ecology.
Research Data Management Services at UWA (November 2015)Katina Toufexis
Research Data Management Services at the University of Western Australia (November 2015).
Created by Katina Toufexis of the eResearch Support Unit (University Library).
CC-BY
Legal and regulatory challenges to data sharing for clinical genetics and ge...Human Variome Project
There are many factors that impede genomic variant sharing in the UK, despite it becoming a necessary part of clinical care. These include the lack of a designated infrastructure or mechanism aggravated by the complexity of laws that apply, and fragmented and variable advice from local ‘Caldicott guardians’ who guide NHS trusts on their responsibilities concerning data protection and confidentiality. Since the legitimacy of data sharing in the UK is framed in terms of ‘personal data’ being shared for ‘direct care’ (subject to legal exceptions), the blurred boundaries between clinical care and research, and the spectrum of identifiability of data also lead to differing interpretations resulting in inconsistent practices.
In a multidisciplinary collaboration, the PHG Foundation and the UK’s Association for Clinical Genetic Science co-hosted a workshop to examine the clinical necessity for sharing variant data and associated phenotypic information, the technical feasibility and the legal and regulatory impediments to such sharing. Delegates included clinicians, laboratory scientists, and key policy makers, including the National Data Guardian for Health and Care and representatives from the 100,000 Genomes Project, a pioneering research project which promises to build a legacy for future genomics services in the UK. The key finding from our work was that current arrangements for sharing genomic variants within the NHS are unsatisfactory and inconsistent practices are compromising safety and quality. Our workshop report [1] highlights the urgent need for (i) national agreement to optimise sharing within the NHS and develop consensus on the legitimacy of data sharing, (ii) standardised operational processes, including a designated sustainable database or mechanism for sharing, and (iii) strong leadership by the multiple relevant health organisations to demonstrate the benefits and risks associated with sharing and not sharing data.
Since publication of the workshop report, the NHS Consortium (operating within the DECIPHER database) has reported a 120% increase in the number of cases shared, the 100,000 Genomes Project and associated data embassy have got underway and the EU Data Protection Regulation has been finalised. However research highlights continuing public reservations about some aspects of data sharing including commercial access and misgivings around secondary uses of data. Publication of the National Data Guardian’s long-awaited review of consent and security provisions to provide guidance on a new consent and opt-out model for sharing patient information in the NHS, has been delayed pending the results of the EU referendum being known. Against this backdrop, the imperative to develop robust, proportionate policies for genomic data sharing becomes increasingly acute.
Funding from the PHG Foundation and the Association for Clinical Genetic Science.
David B. Resnik MedicReS World Congress 2015MedicReS
Protecting Privacy and Confidentiality in the Age of Big Data Presentation to MedicReS 5th World Congress on October 19,25,2015 in New York - David B. Resnik, JD, PhD, Bioethicist, NIH/NIEHS
The document discusses open data and data sharing, including defining open data, the benefits of open data, overcoming barriers to opening data such as concerns about scooping and sensitive data, best practices for making data open through formats, licensing and description, and the role of research databases and data citation in promoting open data.
Introduction to Research Data Management at UWAKatina Toufexis
This document summarizes the key benefits of research data management. It discusses how research data management helps with compliance by meeting requirements of international and national funding agencies as well as publishers. It also promotes efficiency in the research process, ensures security of data, allows access for validation and collaboration, and improves quality through enabling replication. The document provides an overview of the Research Data Management Toolkit available at UWA to support researchers in managing their data over the research lifecycle.
This document discusses licensing research data for reuse. It begins by providing a scenario where a user has downloaded a dataset but is unsure what they can do with the data due to licensing. It then discusses that licensing is critical to enabling data reuse and citation. It provides information on AusGOAL, the Australian open access and licensing framework, and notes it is recommended for data publishing by ANDS partners. It also includes links to licensing guides and FAQs. In summary, the document emphasizes the importance of data licensing for enabling reuse and outlines Australia's recommended licensing system.
Open science framework – Jeff Spies, Centre for Open Science
Active research from lab to publication – Simon Coles, University of Southampton
Managing active research in the university – Robin Rice, University of Edinburgh
Making research available: FAIR principles and Force 11 - David De Roure, Oxford e-Research Centre
Jisc and CNI conference, 6 July 2016
Clinical Trial Data Transparency: Explaining Governance for Public Data SharingHealth Data Consortium
Watch the webinar here: http://www.screencast.com/t/0lATKYlJ8
Dr. Chris Boone, then-VP in Avalere’s Evidence Translation and Implementation Practice, discussed clinical trial data transparency and considerations for governance and open data sharing. Clinical trials are extremely valuable as the primary data source for seeking regulatory approval of products. Historically, regulatory agencie have been the sole recipients of clinical trial data, butthere has been a recent push from various stakeholder groups to open access to clinical trial data to non-regulatory researchers as an act of ethical responsibility to patients, a contribution to public health, and a demonstrated commitment to advancing the science. Some of the barriers include developing a sound approach for de-identifying patient data, adopting universal clinical trial data format, and managing the proactive and non-selective access and security of clinical data once collected. Dr. Boone discusses rationales and benefits/risks of clinical trial transparency, responsible use of publicly sharing this data, barriers and legal implications, and reasonable data sharing models.
Discover more health data resources on our website at http://www.healthdataconsortium.org/
Accessing data for research: data publishing pathways and the Five SafesLouise Corti
Presented atL Assessing Disclosure Risk in Population Research Data and Outputs, Children of the 90s (ALSPAC)
Bristol Medical School, 24 January 2020.
In this half day session, we introduce the concept of a Safe Health Researcher, where both data producers and users are not only aware of key data legal, ethical and security measures surrounding the management and publication of biomedical research data, but also any risk in outputs they are creating.
The practical training session aimed at aimed at data managers looks at key elements of disclosure risk and trust in sharing biomedical data. We will cover the principles and practicalities of reviewing disclosure risk in numeric data sources and in research outputs.
The art of depositing social science data: maximising quality and ensuring go...Louise Corti
The document provides guidance for depositing data into a research data repository. It discusses incentivizing researchers to share data, developing data policies, reviewing data for quality and disclosure risks, preparing documentation, assigning licenses, and providing support to depositors. The role of the repository manager is to work with depositors to prepare data according to best practices and the repository's standards to ensure long-term preservation and access.
Use of data in safe havens: ethics and reproducibility issuesLouise Corti
The document discusses ethics and reproducibility issues related to using data in safe havens. It summarizes the UK Data Service, which curates social science data and uses various safeguards to provide access to controlled data through its spectrum of access. It describes legal gateways for data sharing, the Digital Economy Act, and the UK Statistics Authority's accreditation process for researchers and projects. It also discusses the UK Statistics Authority's ethics self-assessment tool and factors that can impact reproducibility when data and code are behind access restrictions in safe havens.
Certifying and Securing a Trusted Environment for Health Informatics Research...Jisc
The document discusses the certification and securing of a trusted environment for health informatics research data at the University of Dundee. It provides an overview of the Health Informatics Centre, its research data management platform, safe haven architecture, and ISO27001 certification. The platform standardizes data extraction and release, adds metadata and quality checks. A safe haven uses pseudonymized data and virtual environments prevent data from leaving. ISO27001 certification provides governance and reduces documentation through standardized information security practices.
This document discusses challenges and options for sharing qualitative research data while protecting confidentiality. It outlines strategies such as obtaining informed consent across the data lifecycle, anonymizing data through techniques like replacing names with pseudonyms, and regulating access to sensitive data. The document provides examples of consent forms that address data sharing and future reuse. It also describes the UK Data Service's repository ReShare, which allows researchers to deposit and publish metadata about their data collections while applying access controls or embargoes as needed.
Making Qualitative Data Open - Libby Bishop, UK Data ServiceThordis Sveinsdottir
This document discusses challenges and options for sharing qualitative research data while protecting confidentiality. It outlines strategies such as obtaining informed consent across the data lifecycle, anonymizing data through techniques like replacing identifying information, and regulating access to sensitive data. The document provides examples of consent forms that address data sharing and archiving. It also describes the UK Data Service's repository ReShare, which allows researchers to deposit and publish metadata about their data collections while applying access controls or embargoes as needed.
Stories from the Field: Data are Messy and that's (kind of) okJisc RDM
This document introduces Jude Towers and David Ellis, who are lecturers focused on quantitative methods and computational social science. They discuss how data can be messy, including inconsistencies in concepts and definitions, difficulties in data collection, and the politics of data cleaning. They argue that while data is imperfect, it is still useful for understanding society when the signal is distinguished from the noise. They provide two examples of working with messy real-world data: administrative health records from the NHS and social science replication problems. Their overall goal is to help people critically engage with quantitative data.
Lesson 2 in a set of 10 created by DataONE on Best Practices fo Data Management. The full module can be downloaded from the DataONE.org website at: http://www.dataone.org/educaiton-modules. Released under a CC0 license, attribution and citation requested.
20170530_Open Research Data in Horizon 2020OpenAIRE
This document discusses open research data in Horizon 2020 projects. It provides an overview of the OpenAIRE network, the European Commission's open access mandate, and requirements for open research data under Horizon 2020. Projects starting in 2017 are included in the open data policy by default and must make their data openly available. Reasons for opting out of open data requirements are also presented.
Grampian safe haven, research data networkJisc RDM
Safe havens" should be developed as an environment for population-based research where the risk of identifying individuals is minimized. Researchers in safe havens are bound by strict confidentiality codes preventing disclosure of personally identifying information and providing sanctions for breaches of confidentiality.
This document discusses best practices for preparing and sharing research data. It emphasizes obtaining proper consent from participants, performing a risk analysis to avoid re-identification, and considering appropriate sharing methods such as data repositories. Sharing data benefits the research community by encouraging new collaborations and validation of results, but must be balanced with obligations to protect participants and intellectual property. The document provides guidance on topics like data licensing, anonymization, and the policies of research institutions and journals regarding data sharing.
This document discusses social media use and privacy in health contexts. It provides statistics on internet usage in Thailand that show a majority of the population uses social media. It then presents several case studies of issues around social media use in healthcare. It concludes with a discussion of risks of social media use for health professionals and the need for organizational social media policies and guidelines to promote proper and ethical use.
SciDataCon - How to increase accessibility and reuse for clinical and persona...Fiona Nielsen
Presented in session 48 - Sharing of sensitive data - presented by Fiona Nielsen on September 12, 2016 at #SciDataCon http://scidatacon.org
We have addressed the most pressing problem for public genomic data, that of data discoverability, by indexing worldwide resources for genomic research data on an online platform (repositive.io) providing a single point of entry to find and access available genomic research data.
http://www.scidatacon.org/2016/sessions/48/paper/26/
http://www.scidatacon.org/2016/sessions/48/
International data week - #RDAPlenary #IDW2016
Sourcing health data for open-access collectionGreg D'Arcy
La Trobe University Library partnered with our Health Sciences academics to procure datasets from two Victorian regional health service providers in 2014/15 and from these created a publically available, healthy communities data collection for research purposes
Data sharing promotes many goals of the NIH research endeavor. It is particularly important for unique data that cannot be readily replicated. Data sharing allows scientists to expedite the translation of research results into knowledge, products, and procedures to improve human health. Do you know what a data sharing plan should include? Are you aware of common practices and standards for data sharing? Do you know what services are available to help share your data responsibly? This workshop will begin to address these questions. Q&A will follow the presentation. Anyone interested in or planning to apply for NIH funding should attend. Note: The NIH data-sharing policy applies to applicants seeking $500,000 or more in direct costs in any year of the proposed research.
FSCI Drivers and Barriers to sharing research dataARDC
Exploring drivers for managing and sharing research data and related materials
Why focus is no longer just on publications: reproducibility ‘crisis’, not repeating research, return on public dollar investment etc
Drivers include: governments, funding bodies, publishers, institutions, research communities, researchers (secondary data users + to access and analyse own data), general public etc
Spotlight on publishers as a key driver (do you think this is a good thing?)
What is the reproducibility crisis?
Examining barriers for managing and sharing research data and related materials
Culture and community
Policy
Technical
This document provides an overview of ISSDA (Ireland's leading centre for quantitative data acquisition, preservation, and dissemination) and how to find and access data. It discusses key concepts like primary/secondary data and quantitative/qualitative data. It also outlines ISSDA's objectives to be a central access point and facilitate data analysis skills. The document guides users on finding data sources in Ireland, Europe, and internationally and how to access data through registering, terms of use, and citing data properly.
Accessing and using TILDA data, available through ISSDAISSDA
Accessing and using TILDA data, available through Irish Social Science Data Archive (ISSDA), Using publicly archived TILDA datasets. Delivered by TILDA in conjunction with the Irish Social Science Data Archive (ISSDA) and Gateway to Global Aging.
Irish Social Science Data Archive Services for Depositors & ResearchersISSDA
The Irish Social Science Data Archive (ISSDA) is Ireland's leading center for acquiring, preserving, and disseminating quantitative social science datasets. Based at University College Dublin Library, ISSDA's mission is to ensure wide access to Irish and international comparative social science data. ISSDA professionally curates data by checking for anonymization, creating metadata records, and working towards long-term preservation. ISSDA also disseminates data through its platform under various licenses and provides usage reports to depositors. Future services will include assigning DOIs to data and implementing the Nesstar data publishing and analysis software.
This presentation covers the background to the Irish Social Science Data Archive (ISSDA), some of the sports related datasets that are available, how to access these data and tip to researchers using these data for secondary analysis.
LAND USE LAND COVER AND NDVI OF MIRZAPUR DISTRICT, UPRAHUL
This Dissertation explores the particular circumstances of Mirzapur, a region located in the
core of India. Mirzapur, with its varied terrains and abundant biodiversity, offers an optimal
environment for investigating the changes in vegetation cover dynamics. Our study utilizes
advanced technologies such as GIS (Geographic Information Systems) and Remote sensing to
analyze the transformations that have taken place over the course of a decade.
The complex relationship between human activities and the environment has been the focus
of extensive research and worry. As the global community grapples with swift urbanization,
population expansion, and economic progress, the effects on natural ecosystems are becoming
more evident. A crucial element of this impact is the alteration of vegetation cover, which plays a
significant role in maintaining the ecological equilibrium of our planet.Land serves as the foundation for all human activities and provides the necessary materials for
these activities. As the most crucial natural resource, its utilization by humans results in different
'Land uses,' which are determined by both human activities and the physical characteristics of the
land.
The utilization of land is impacted by human needs and environmental factors. In countries
like India, rapid population growth and the emphasis on extensive resource exploitation can lead
to significant land degradation, adversely affecting the region's land cover.
Therefore, human intervention has significantly influenced land use patterns over many
centuries, evolving its structure over time and space. In the present era, these changes have
accelerated due to factors such as agriculture and urbanization. Information regarding land use and
cover is essential for various planning and management tasks related to the Earth's surface,
providing crucial environmental data for scientific, resource management, policy purposes, and
diverse human activities.
Accurate understanding of land use and cover is imperative for the development planning
of any area. Consequently, a wide range of professionals, including earth system scientists, land
and water managers, and urban planners, are interested in obtaining data on land use and cover
changes, conversion trends, and other related patterns. The spatial dimensions of land use and
cover support policymakers and scientists in making well-informed decisions, as alterations in
these patterns indicate shifts in economic and social conditions. Monitoring such changes with the
help of Advanced technologies like Remote Sensing and Geographic Information Systems is
crucial for coordinated efforts across different administrative levels. Advanced technologies like
Remote Sensing and Geographic Information Systems
9
Changes in vegetation cover refer to variations in the distribution, composition, and overall
structure of plant communities across different temporal and spatial scales. These changes can
occur natural.
This presentation was provided by Steph Pollock of The American Psychological Association’s Journals Program, and Damita Snow, of The American Society of Civil Engineers (ASCE), for the initial session of NISO's 2024 Training Series "DEIA in the Scholarly Landscape." Session One: 'Setting Expectations: a DEIA Primer,' was held June 6, 2024.
This presentation includes basic of PCOS their pathology and treatment and also Ayurveda correlation of PCOS and Ayurvedic line of treatment mentioned in classics.
How to Make a Field Mandatory in Odoo 17Celine George
In Odoo, making a field required can be done through both Python code and XML views. When you set the required attribute to True in Python code, it makes the field required across all views where it's used. Conversely, when you set the required attribute in XML views, it makes the field required only in the context of that particular view.
বাংলাদেশের অর্থনৈতিক সমীক্ষা ২০২৪ [Bangladesh Economic Review 2024 Bangla.pdf] কম্পিউটার , ট্যাব ও স্মার্ট ফোন ভার্সন সহ সম্পূর্ণ বাংলা ই-বুক বা pdf বই " সুচিপত্র ...বুকমার্ক মেনু 🔖 ও হাইপার লিংক মেনু 📝👆 যুক্ত ..
আমাদের সবার জন্য খুব খুব গুরুত্বপূর্ণ একটি বই ..বিসিএস, ব্যাংক, ইউনিভার্সিটি ভর্তি ও যে কোন প্রতিযোগিতা মূলক পরীক্ষার জন্য এর খুব ইম্পরট্যান্ট একটি বিষয় ...তাছাড়া বাংলাদেশের সাম্প্রতিক যে কোন ডাটা বা তথ্য এই বইতে পাবেন ...
তাই একজন নাগরিক হিসাবে এই তথ্য গুলো আপনার জানা প্রয়োজন ...।
বিসিএস ও ব্যাংক এর লিখিত পরীক্ষা ...+এছাড়া মাধ্যমিক ও উচ্চমাধ্যমিকের স্টুডেন্টদের জন্য অনেক কাজে আসবে ...
How to Build a Module in Odoo 17 Using the Scaffold MethodCeline George
Odoo provides an option for creating a module by using a single line command. By using this command the user can make a whole structure of a module. It is very easy for a beginner to make a module. There is no need to make each file manually. This slide will show how to create a module using the scaffold method.
How to Setup Warehouse & Location in Odoo 17 InventoryCeline George
In this slide, we'll explore how to set up warehouses and locations in Odoo 17 Inventory. This will help us manage our stock effectively, track inventory levels, and streamline warehouse operations.
हिंदी वर्णमाला पीपीटी, hindi alphabet PPT presentation, hindi varnamala PPT, Hindi Varnamala pdf, हिंदी स्वर, हिंदी व्यंजन, sikhiye hindi varnmala, dr. mulla adam ali, hindi language and literature, hindi alphabet with drawing, hindi alphabet pdf, hindi varnamala for childrens, hindi language, hindi varnamala practice for kids, https://www.drmullaadamali.com
How to Manage Your Lost Opportunities in Odoo 17 CRMCeline George
Odoo 17 CRM allows us to track why we lose sales opportunities with "Lost Reasons." This helps analyze our sales process and identify areas for improvement. Here's how to configure lost reasons in Odoo 17 CRM
2. The UK Data Service
• Single point of access to wide range of social science data:
ukdataservice.ac.uk
• Funded by the ESRC to serve the academic community: training
and guidance; UK Data Archive established 1967
• Used by academic researchers and students; government analysts;
charities; business; research centres; think tanks
• Survey microdata; cohort studies; international macrodata; census
data; qualitative/mixed methods data
• Support and guide data creators, including disclosure review
(anonymisation) and preparation for archiving
3. Protecting confidentiality: the ‘5 Safes’
Five guiding principles:
• Safe people - educate researchers to use data safely
• Safe projects - research projects for ‘public good’
• Safe settings - SecureLab system for sensitive data
• Safe outputs - SecureLab projects outputs screened
• Safe data - treat the data to protect respondent
confidentiality
• For this session, we will concentrate (mostly) on Safe
data
4. Data collection: planning
• Explain to respondents what archiving entails and gain
agreement for data sharing – informed consent
• Think about disclosure risks before starting – what kind
of information do you need to collect?
• Direct identifiers include: names; addresses; telephone
numbers; email addresses; photos; (perhaps) IP
addresses; do you really need them?
• Unless explicit consent obtained for sharing, direct
identifiers should always be removed from data
5. Anonymising data: indirect identifiers
Indirect identifiers include:
• Sensitive information: health information/medical
conditions; crime victimisation/offending; drug/alcohol
use etc.
• ‘Less sensitive’ information: age/birth date; educational
characteristics; employment details; religious affiliation;
household size; geographic area
• Look at demographics in combination (e.g.
demographics + geographies)
• Text/string variables – too detailed?
6. Anonymising indirect identifiers
• Aggregate categories to reduce precision
• Band ages, incomes, expenditure, etc. to disguise outliers
• Use standard coding frames – e.g. SOC2010
• Generalise meaning of detailed text
• Document the changes you make
• Talk to other researchers, archives, data services
Published guides:
• UCD Research Data Management Guide
http://libguides.ucd.ie/data/ethics
• ONS Disclosure control guidance for microdata produced from social
surveys
http://www.ons.gov.uk/methodology/methodologytopicsandstatisticalc
oncepts/disclosurecontrol/policyforsocialsurveymicrodata
7. Anonymising data: new developments and tools
Statistical Disclosure Control (SDC) software is available:
• mu-Argus
• standalone software package recommended by Eurostat for
government statisticians
• software and manual: http://neon.vb.cbs.nl/casc/mu.htm
• R tool - SDCMicro (GUI)
• Software, manual:
http://www.inside-r.org/packages/cran/sdcMicro/docs/sdcMicro
• new documentation being developed by UK Data Service, working with
R developers
8. Quiz 1: disclosive text in job title
Job title Frequency Valid Percent
nurse 73 73.0
carer for elderly man 1 1.0
hospital ward cleaner 1 1.0
social science researcher 1 1.0
head of dental practice 2 2.0
cleaner in electronics factory 1 1.0
Financial Director, Sunnyview Care Home,
Colchester
1 1.0
general manager 1 1.0
GP 1 1.0
Manager, Cotterill Village Stores 1 1.0
works in electronics factory 1 1.0
on benefits, not working 1 1.0
police officer 2 2.0
consultant, geriatric psychiatry 1 1.0
Reetired 1 1.0
retired 1 1.0
Retired 1 1.0
retirement 1 1.0
geography teacher 2 2.0
Teacher, music 2 2.0
Seondary school teeacher 1 1.0
unemployed 1 1.0
web designer 2 2.0
Total 100 100.0
13. Quiz 3: banded age
Age (banded)
Frequency Valid Percent
1 16-20 40 40.0
2 21-30 22 22.0
4 41-50 13 13.0
5 51-60 19 19.0
6 60-64 6 6.0
Total 100 100.0
14. Access control
• Don’t over anonymise - find balance between protecting
respondents’ confidentiality and maintaining research
usability of data
• Can’t fully anonymise data without removing all the
useful detail? Go back to the 5 Safes – think about
access control: Safe people, Safe settings, Safe outputs
15. Access control
• At UK Data Service, data available under 3 access levels:
• OPEN – open public access
• SAFEGUARDED – downloadable, but use is traceable
• Registered users only (agree not to try to identify any
individual respondents)
• Special agreements/licence: permission-only access;
approved projects – usage agreed in advance
• CONTROLLED – accredited users take a further training course
• Access via on-site safe setting or virtual secure environment
(SecureLab)
• Outputs disclosure-checked before publication
16. Anonymising quantitative data: summary
• Informed consent
• Think about level of detail needed before data collection
• Remove direct identifiers
• Check and treat indirect identifiers to reduce disclosure
risk
• Document your changes
• Balance anonymisation with access control to preserve
data usability
17. Questions?
Guidance on anonymisation:
• UCD: http://libguides.ucd.ie/data/ethics
• UKDS: www.data-archive.ac.uk/create-manage/consent-
ethics/anonymisation
• Managing and Sharing Research Data book
https://uk.sagepub.com/en-gb/eur/managing-and-sharing-research-
data/book240297