The 1958 Birth Cohort Biomedical Resource - facilitating access to data and samples and enhancing future utility

Lead Research Organisation: University of Bristol
Department Name: Social Medicine

Abstract

The 1958 Birth Cohort (1958BC) recruited 98% (17,416) of all children born in Great Britain during one week in March 1958. Participants have since been followed longitudinally and have taken part in up to eight further social-science-led surveys (1965-2008) as well as a range of other special initiatives and media events. But, despite the undoubted scientific success of 1958BC, strategic thinking in the new Millennium suggested the need for an additional bio-medically focussed survey. The Biomedical Survey took place in 2002-2003 (participants aged 44-45) under the MRC?s ?Health of the Public? initiative. In total, 12,037 subjects were contacted and 9,377 were interviewed. The aim was to obtain critical biomedical information via questionnaires, physical measures and biospecimen collection and to use this to examine how developmental, lifestyle, and environmental factors act throughout the lifespan to influence ill health, and physiological and psychological function in early middle age. At the same time, the Wellcome Trust funded creation of immortal cell lines from the biosamples in the Survey and these now provide an unlimited source of DNA in more than 7,500 study participants. The Biomedical Resource that now integrates all of the data and samples from the biomedical survey has subsequently provided a wonderful enabling resource for UK Bioscience. More than 658 awards of data and samples have been made to research groups across the world (mainly in UK) since 2002 and, so far, more than 350 peer reviewed publications have been based on these awards. Perhaps most impressively, the 1958BC Biomedical Resource provided 3,000 controls in Wellcome Trust Case Control Consortium (WTCCC) that investigated the genes causing 8 important chronic diseases including diabetes, coronary artery disease and depression. WTCCC was designated international ?Research Leader of the Year? in by Scientific American Magazine in January 2008. But the Biomedical Resource and access to it both require careful management and thoughtful strategic development. This infrastructural grant, coming jointly from the Universities of Leicester and Bristol, reflects strategic thinking at MRC, WT and ESRC. It will secure sustainability of data and sample access and strategic development of the Resource until 2014. The proposal subsumes three complementary objectives: (1) secure the basic infrastructure; (2) enhance the infrastructure from an administrative and strategic management perspective; (3) enhance the infrastructure from a scientific perspective. These objectives will ensure that both the 1958BC, and UK Bioscience, are best placed to face the scientific challenges of the future.

Technical Summary

This infrastructural project is targeted at strategic development of that component of the 1958 Birth Cohort (1958BC) that is known as the ?Biomedical Resource?. It will ensure that optimum utility can be extracted from the Resource during 2011-2014 and that the 1958BC will then be well placed to maintain and extend its internationally hailed contribution to research in the biomedical and social sciences. The proposal subsumes three complementary objectives: (1) secure the basic infrastructure as it now exists, thus ensuring that the successful systems that have already been implemented can be maintained into the future; (2) enhance the infrastructure from an administrative and strategic management perspective to ensure that it can face expected and unexpected future challenges and opportunities both effectively and resiliently; (3) enhance the infrastructure from a scientific perspective to ensure that both the 1958BC, and UK Bioscience, are best placed to face the scientific challenges of the future. The new science underpinning this application is focused entirely on optimising and enhancing the utility of the pre-existing Biomedical Resource ? the proposal contains no hypothesis-driven research and no funding is sought for additional data or sample collection from study participants. The responsibility for strategic development of the cohort as a whole ? including planning for future data sweeps - will remain with the Centre for Longitudinal Studies (CLS). This application reflects a considered evolution in the thinking of the funders (MRC, WT, ESRC) about strategic development of the 1958BC Biomedical Resource and of the systems and policies governing access to it. Initially, responsibility for access and strategic development lay with the Principal Investigators of the original grant. But, it later became clear that if resource utility was to be optimised it should be managed and developed by independent scientists and administrators. In 2008, responsibility for managing the 1958BC biobank therefore transferred to ALSPAC laboratories at the University of Bristol under a joint grant from MRC/WT. Then, in 2009, responsibility for oversight and strategic development of the Biomedical Resource as a whole passed to the independent access committee chaired from the University of Leicester under another small grant from MRC/WT. Following strategic discussions with MRC, WT and ESRC, the University of Leicester and University of Bristol now outline a vision for joint management of the Biomedical Resource, to include its strategic development as an infrastructure, under a grant requesting limited - but adequate - funding to ensure sustainability.

Publications

10 25 50
 
Description Alberta's Tomorrow Project
Geographic Reach North America 
Policy Influence Type Participation in advisory committee
Impact P Burton is Chair of the advisory Committee. We provide a model for other major data providers to help them manage and provide access to data and samples in longitudinal studies, particularly in terms of facilitating and enhancing applications for new secondary research. Paul Burton is Chair of the Scientific Advisory Board for Alberta's Tomorrow Project and uses 1958BC experience as a template for advice to this Canadian Study.
 
Description BRISSkit (Biomedical Research Infrastructure Software Service kit)
Geographic Reach National 
Policy Influence Type Participation in advisory committee
 
Description Feedback of clinically relevant findings
Geographic Reach Multiple continents/international 
Policy Influence Type Influenced training of practitioners or researchers
 
Description INBANK Oversight Committee
Geographic Reach National 
Policy Influence Type Participation in advisory committee
Impact We provide a model for other major data providers to help them manage and provide access to data and samples in longitudinal studies, particularly in terms of facilitating and enhancing applications for new secondary research. Paul Burton uses 1958BC experience as a template for advice to this Study.
 
Description Membership on Wellcome Trust's Case Control Consortium Data Access Committee
Geographic Reach National 
Policy Influence Type Participation in advisory committee
Impact Many applications for data reviewed and data awarded. Madeleine Murtagh's involvement on Committee has ensured that issues perceived as important for 1958BC are dealt with appropriately on the DAC. This was reflected in a specific issue raised at last 1958BC AC3 meeting, where concerns had been raised about an application to WTCCC that possibly violated 1958BC rules about non-commercialisation. We were able to reassure WTCCC DAC that we did not believe a problem existed, but we were pleased that this indicated that communication between the two committees was strong and effective.
 
Description Membership on Wellcome Trust's Expert Advisory Group on Data Access (EAGDA)
Geographic Reach Multiple continents/international 
Policy Influence Type Participation in advisory committee
Impact Last meeting (October 2013) saw several advisory documents produced for funders, whether these will lead to external publications is as yet unclear
 
Description Wellcome Trust's Expert Advisory Group for "Assessing Public Attitudes to Health Related Findings in Research"
Geographic Reach National 
Policy Influence Type Participation in advisory committee
 
Description BBMRI-LPC
Amount £116,736 (GBP)
Funding ID 313010 
Organisation European Commission 
Sector Public
Country European Union (EU)
Start 02/2013 
 
Description Biomedical Resources Grant (jointly funded by MRC & Wellcome Trust)
Amount £642,000 (GBP)
Organisation Wellcome Trust 
Sector Charity/Non Profit
Country United Kingdom
Start 08/2015 
End 07/2020
 
Description DOUBLE ENTRY CANNOT FIND OUT HOW TO DELETE
Amount £140,000 (GBP)
Organisation Economic and Social Research Council 
Sector Public
Country United Kingdom
Start 01/2016 
End 07/2017
 
Description ESRC invitation only call for the recommissioning of the METADAC.
Amount £374,999 (GBP)
Funding ID ES/S008349/1 
Organisation ESRC Impact Acceleration Account Cambridge 
Sector Academic/University
Country United Kingdom
Start 10/2018 
End 09/2020
 
Description Enabling data linkage in CLOSER studies: The DaLEC study (Data Linkage in Epidemiological Cohorts). CLOSER internal investigator award
Amount £140,000 (GBP)
Organisation Economic and Social Research Council 
Sector Public
Country United Kingdom
Start 01/2016 
End 12/2016
 
Description The Avon Longitudinal Study for Parents and Children: An international resource for population genomic and lifecourse epidemiology
Amount £7,900,000 (GBP)
Funding ID 102215/Z/13/Z 
Organisation Wellcome Trust 
Sector Charity/Non Profit
Country United Kingdom
Start 04/2014 
End 03/2019
 
Description Understanding Society Data Access Committee Secretariat Support
Amount £27,071 (GBP)
Organisation Economic and Social Research Council 
Sector Public
Country United Kingdom
Start 05/2014 
End 04/2015
 
Description World Universities Network Research Development Fund - Workshop on sharing sensitive data
Amount £25,028 (GBP)
Organisation Worldwide Universities Network 
Sector Academic/University
Country Global
Start 08/2016 
End 08/2017
 
Title DataSHIELD 
Description DataSHIELD is an IT and statistical tool to promote data sharing and federated analysis of partitioned data, including fitting generalised linear mixed models. 
Type Of Material Improvements to research infrastructure 
Year Produced 2014 
Provided To Others? Yes  
Impact DataSHIELD has been presented at three workshops in 2013 and an initial analysis performed involving harmonisation of 96 variables in 9 projects including the 1958BC. A paper has been submitted describing the initial analysis. 
URL http://www.datashield.org/
 
Title DataSHaPER 
Description DataSHaPER is an IT and epidemiological tool to promote data harmonization prior to data sharing and/or federated analysis of data from multiple sources. 
Type Of Material Improvements to research infrastructure 
Year Produced 2010 
Provided To Others? Yes  
Impact DataSHaPER being used by a number of international projects. A paper specifically about the recent harmonization for the Healthy Obese Project is submitted (and we believe, very close to acceptance). 
URL https://www.bioshare.eu/content/healthy-obese-project-dataschema
 
Title Linking Phenotypes and Genotypes 
Description The potential to release linked genotype-phenotype data in a secure but streamlined manner opens up new research opportunities that will contribute immeasurably to forthcoming developments in biomedical and social science.This was a primary aim under the 58READIE Grant and has successfully been achieved 
Type Of Material Improvements to research infrastructure 
Year Produced 2012 
Provided To Others? Yes  
Impact Applications for linked genotypes and phenotypes are being accepted and granted on a regular basis. 
 
Description 58-READIE and METADAC 
Organisation University of Bristol
Department School of Social and Community Medicine
Country United Kingdom 
Sector Academic/University 
PI Contribution The METADAC team makes ethical and governance judgments about best practice, influencing and informing the decisions and practice of the 58-READIE team in issuing 1958 birth cohort data and samples for research use.
Collaborator Contribution The 58-READIE team (under grant G1001799) makes practical and technical judgments about data and sample maintenance and issue, taking into account good practice and cost effectiveness, informing and influencing the decisions and practice of the METADAC team in refining approvals for before issue of 1958 birth cohort data and samples for research use.
Impact The outcome is an evolving understanding of the application of governance policies in practice in longitudinal studies. The collaboration includes social science, ethicolegal expertise, genetic and medical science, bioinformatics
Start Year 2015
 
Description ALSPAC (Various grants including 2010 Strategic Renewal funded by MRC and WT) 
Organisation University of Bristol
Department Avon Longitudinal Study of Parents and Children (ALSPAC)
Country United Kingdom 
Sector Academic/University 
PI Contribution ALSPAC and 1958BC have worked together (and in collaboration with BioSHaRE-eu) in the joint development of DataSHIELD, and in continuing to explore the extension of ESPRESSO (the power calculator developed for designing UK Biobank) to enable construction of simulated study data that applicants can work with before making a definitive application for real data. This will help applicants to refine their applications to enhance efficiency, and will avoid misunderstandings where a research group is literally unable to do what they thought they could do when they applied.
Collaborator Contribution Paul Burton has just moved to University of Bristol where he has taken on a central role in the ALSPAC project. Precisely how extensive this role will be, and the extent to which the funders (MRC and WT) would like us to move towards a seamless joint management structure for 1958BC and ALSPAC is currently a focus of active discussion between the two projects and the funders. Joint work on enhancing data access infrastructures for both 1958BC and ALSPAC (Burton, Davey-Smith, Ring).
Impact ESPRESSO work is ongoing. In addition, both 58READIE and ALSPAC are working together to develop an online application system which can be used by both cohorts in order to streamline the application and awards process. New ESPRESSO paper (in collaboration with UK Biobank) recently submitted, Opal/DataSHaPER/DataSHIELD paper describing true federated analysis is on the point of being accepted.
Start Year 2010
 
Description BBMRI-LPC 
Organisation UK Biobank
Country United Kingdom 
Sector Charity/Non Profit 
PI Contribution Staff associated with the 58READIE project at the University of Leicester are managing the UK arm of the study, managing the submission of applications to the 1958 Birth Cohort and the UK Biobank that qualify under the BBMRI-LPC access criteria (more than one EU nation with no applicant from the nation hosting the specified biobanks). Qualifying access applications that also pass the standard review procedures (of 1958 Birth Cohort or UKBB) will be entitled to a subsidy under BBMRI-LPC.
Collaborator Contribution BBMRI-LPC (Biobanking and Biomolecular Resources Research Infrastructure - Large Prospective Cohorts) is an EU Research Infrastructure Project that aims to improve access and standardize procedures, smoothing access to samples and/or data and allowing integrated research across different cohorts by independent European investigators. In coordination with BBMRI, the proposal will develop a large prospective cohort management structure for a connection, integration and access provision project BBMRI-LPC. BBMRI-LPC is using 1958BC as one of its two major UK data access sites.
Impact Staff on the 58READIE project continue to provide advice and information about the cohort to enable BBMRI-LPC to update their cohort catalogues and meet their required work package deliverables.
Start Year 2012
 
Description BBMRI-LPC 
Organisation UK Biobank
Country United Kingdom 
Sector Charity/Non Profit 
PI Contribution Staff associated with the 58READIE project at the University of Leicester are managing the UK arm of the study, managing the submission of applications to the 1958 Birth Cohort and the UK Biobank that qualify under the BBMRI-LPC access criteria (more than one EU nation with no applicant from the nation hosting the specified biobanks). Qualifying access applications that also pass the standard review procedures (of 1958 Birth Cohort or UKBB) will be entitled to a subsidy under BBMRI-LPC.
Collaborator Contribution BBMRI-LPC (Biobanking and Biomolecular Resources Research Infrastructure - Large Prospective Cohorts) is an EU Research Infrastructure Project that aims to improve access and standardize procedures, smoothing access to samples and/or data and allowing integrated research across different cohorts by independent European investigators. In coordination with BBMRI, the proposal will develop a large prospective cohort management structure for a connection, integration and access provision project BBMRI-LPC. BBMRI-LPC is using 1958BC as one of its two major UK data access sites.
Impact Staff on the 58READIE project continue to provide advice and information about the cohort to enable BBMRI-LPC to update their cohort catalogues and meet their required work package deliverables.
Start Year 2012
 
Description BioSHaRE-EU 
Organisation University of Groningen
Country Netherlands 
Sector Academic/University 
PI Contribution BioSHaRE-EU (Stolk R, et al): FP7 Large Scale Integrating Project (P Burton, Scientific Coordinator; M Murtagh, Co-investigator). At present there are two main collaborative sub-projects: the 1958 Birth Cohort was one of the first three cohorts (since extended to none) that have been set up to enable truly federated joint analysis of harmonized data using, Opal, DataSHaPER and DataSHIELD (Burton) for the Healthy Obese Project (one of the scientific core projects of BioSHaRE-EU). This successful world's "first" was first demonstrated at the BioSHaRE-EU annual conference in Paris (November 2012) and this year's annual meeting (Barcelona, November 2013) has seen the first workshop in which researchers (other than those who have developed the systems) were able to start undertaking true federated harmonized data analysis themselves. This work is now ongoing and will generate important outputs both in terms of the development of DataSHIELD and of the science related to the Healthy Obese Project. BioSHaRE-EU is also central to the development of ESPRESSO (Burton - see Current primary project is a proposed extension of ESPRESSO (see collaboration/partnership with ALSPAC, below). Murtagh is developing a program of ethnographic research based on data access and biobanking. This work is funded jointly under 58READIE and BioSHaRE-EU. With their consent, the ACCC (the committee overseeing access to 1958 Birth Cohort data and samples) is being observed and recorded as part of Murtagh's research program, which feeds in directly to the Social Program in BioSHaRE-EU (which Murtagh leads).
Collaborator Contribution BioSHaRE-EU focuses on the development of a harmonized biobanking and data access infrastructure across Europe with the specific aim of realizing scientific projects that require sample sizes too large to be accrued in any other way.
Impact 58READIE has worked in conjunction with BioSHARE-EU on the Healthy Obese Project to produce a DataSHaPER consisting of 96 harmonised variables. Work on an ethnographic study of the operation of the Access Committee for CLS Cohorts has also been performed with an initial report presented to the Committee itself. Two papers are planned to describe the results of this ethnographic study.
Start Year 2010
 
Description CLOSER 
Organisation Economic and Social Research Council
Country United Kingdom 
Sector Public 
PI Contribution 58READIE is working with CLOSER on a number of issues that are of central strategic importance to the development of effective national mechanisms for data access and exploitation. Two current issues being addressed together are the development of a strategy for utilisation of biosamples (unlike data, these represent a finite resource), and development of a framework for feedback of clinically relevant findings. In addition we interface with CLOSER in relation to data harmonization - a formal DataSHaPER for 1958BC on 96 variables has been created for the Healthy Obese Project under BioSHaRE-eu (harmonized with 8 other major European cohorts) and we will work with CLOSER by contributing our experience in this area to the construction of harmonized meta-data standards for 1958BC planned over the next year
Collaborator Contribution The UK is home to the largest and longest-running longitudinal studies in the world. The Cohorts and Longitudinal Studies Enhancement Resource (CLOSER) plasy a vital role in maximising the use, value and impact of these studies both within the UK and abroad. It will focus on nine of the country's leading studies, with participants born as early as 1911 and as recently as 2007. 1958BC is one of the cohorts centrally involved in CLOSER.
Impact Still in initial stages with full impact yet to be determined
Start Year 2012
 
Description CLOSER 
Organisation University College London
Department Centre for Longitudinal Studies
Country United Kingdom 
Sector Academic/University 
PI Contribution 58READIE is working with CLOSER on a number of issues that are of central strategic importance to the development of effective national mechanisms for data access and exploitation. Two current issues being addressed together are the development of a strategy for utilisation of biosamples (unlike data, these represent a finite resource), and development of a framework for feedback of clinically relevant findings. In addition we interface with CLOSER in relation to data harmonization - a formal DataSHaPER for 1958BC on 96 variables has been created for the Healthy Obese Project under BioSHaRE-eu (harmonized with 8 other major European cohorts) and we will work with CLOSER by contributing our experience in this area to the construction of harmonized meta-data standards for 1958BC planned over the next year
Collaborator Contribution The UK is home to the largest and longest-running longitudinal studies in the world. The Cohorts and Longitudinal Studies Enhancement Resource (CLOSER) plasy a vital role in maximising the use, value and impact of these studies both within the UK and abroad. It will focus on nine of the country's leading studies, with participants born as early as 1911 and as recently as 2007. 1958BC is one of the cohorts centrally involved in CLOSER.
Impact Still in initial stages with full impact yet to be determined
Start Year 2012
 
Description Centre for Longitudinal Studies (CLS) 
Organisation University College London
Department Centre for Longitudinal Studies
Country United Kingdom 
Sector Academic/University 
PI Contribution P Burton sits on the Strategic Advisory Board for the Centre for Longitudinal Studies
Collaborator Contribution The CLS is responsible for running several of Britain's internationally renowned birth cohort studies: the 1958 Birth Cohort; the 1970 Birth Cohort; and the Millennium Cohort Study.
Impact Provision of strategic and scientific advice . Ongoing DataSHIELD and ESPRESSO development - new ESPRESSO paper (in collaboration with UK Biobank) recently submitted, Opal/DataSHaPER/DataSHIELD paper describing true federated analysis is on the point of being accepted.
Start Year 2010
 
Description English Longitudinal Study of Ageing 
Organisation English Longitudinal Study of Ageing (ELSA)
Country United Kingdom 
Sector Charity/Non Profit 
PI Contribution The METADAC project provides data access governance for genetic data combined with phenotypic data produced within the English Longitudinal Study of Ageing (ELSA) and as part of that role provides advice on enacting data access and data sharing policy in practice.
Collaborator Contribution ELSA contributes to policy in practice development within METADAC and with its partners.
Impact Societal outcomes are produced in the form of new basic knowledge and evidence for genetic understandings of health and to contribute to the development of medical treatment and subsequently to better health in the population.
Start Year 2016
 
Description The LIFE Study 
Organisation University College London
Country United Kingdom 
Sector Academic/University 
PI Contribution The research team on 58READIE (Burton, Murtagh) worked closely with the (ESRC-funded) LIFE Study team - focusing in particular on using our knowledge and experience relating to data access and exploitation - to help the LIFE Study draw up a framework for Ethico-Legal and Social Issues and Information Governance. Burton is a member of the LIFE Study Scientific Steering Committee and is Chair of the Subcommittee that was set up to address Ethico-Legal and Social Issues, while Murtagh was a member of the Subcommittee.
Collaborator Contribution Development of a framework for Ethico-Legal and Social Issues and Information Governance.
Impact Report provided to Scientific Steering Committee and then to Independent LIFE Study Governing Board (Chaired by Dame Janet Finch). Report was warmly received.
Start Year 2011
 
Description Understanding Society Data Access Committee Secretariat Support 
Organisation Economic and Social Research Council
Country United Kingdom 
Sector Public 
PI Contribution We provide a model for other major data providers to help them manage and provide access to data and samples in longitudinal studies, particularly in terms of facilitating and enhancing applications for new secondary research
Collaborator Contribution Funding only
Impact The secretariat for the AC3 (Access Committee for CLS Cohorts) which is funded under the 58READIE Grant continues to provide direct support in an advisory capacity to the Understanding Society Data Access Committee Secretariat.
Start Year 2012
 
Description Invited Presentation. CLOSER Knowledge Exchange Workshop on Disclosure Control. Flexible disclosure control for microdata using DataSHIELD. London, January 2017 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact As a recipient of funding from CLOSER for a project (led by Andy Boyd) focussing on the sharing/co-analysis of sensitive data I was invited to contribute to this workshop which was pitched at a mathematically more technical audience with greater theoretical and practical experience in working in data integration and the sharing of sensitive information than at most of the venues where I present. As well as describing DataSHIELD and its role as tool to support the sharing/co-analysis of sensitive data, I was also able to provide the workshop with practical issues and challenges arising from my work with the 1958 Birth Cohort under 58READIE (now 58FORWARDS) grant and ALSPAC.

This was particularly useful for me because it enabled me to get more technical feedback than I usually receive. This was useful not only for DataSHIELD development, but also for strategy relating to infrastructural development under the 58FORWARDS grant
Year(s) Of Engagement Activity 2016
URL http://www.closer.ac.uk/event/methods-disclosure-control/
 
Description Membership of Expert Committee to judge large grants submitted by Quebecoise applicants to the Canadian Foundation for Innovation fund (2017) - Montreal 23-24/1/2017 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact The Canada Foundation for Innovation (CFI) was created by the Government of Canada in 1997. It aims to build Canada's capacity to undertake world-class research and technology development that benefits all Canadians. Because of major CFI investments in state-of-the-art infrastructure, Canadian universities, colleges, research hospitals and non-profit research institutions are able to attract and retain more top research talent from around the world, facilitate the training of the next generation of Canadian researchers, and to support private-sector innovation and the creation of high-quality jobs that strengthen Canada's position in the global knowledge-based economy.

I was invited to sit as an overseas member on a provincial (Quebecoise) panel aimed at identifying the strongest applications from Quebec that fell under the heading "OMIQUES / OMICS" - primarily genomics and metabolomics. At a subsequent provincial meeting pulling all applications together across all of Quebec the assessments of our panel will determine which applications (under 'omics) will be put forward to the national competition. My panel reviewed a total of 13 applications over two days and I was one of the two lead presenters on 3 of these.

In the 2017 Innovation Fund competition, CFI will invest up to $425 million for large research infrastructure in Canada. For this competition, the CFI had asked institutions to propose transformative infrastructure projects to underpin cutting-edge research. The aim is to support major initiatives that allow institutions and their researchers to build on established capabilities to accelerate current research and technology development or to enhance emerging strategic priority areas.

I was able to bring knowledge and experience derived in no small part from my work with the 1958BC and ALSPAC projects to help consideration of grants which generally had a major epidemiological component and, in particular, the application of high throughput omics work on large scale biomedical/health science infrastructures. In return I learnt a lot - both from the funding mechanism and from the high quality applications about how another nation is organising its strategic development of this field which entails huge amounts of research funding.
Year(s) Of Engagement Activity 2017
URL https://www.innovation.ca/sites/default/files/Funds/2017-if-guidelines-to-complete-a-notice-of-inten...
 
Description University of Adelaide. Talk on development of DataSHIELD 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Postgraduate students
Results and Impact Disseminated understanding and knowledge of DataSHIELD within Australia and related this to importance of liberal but secure data sharing from major biomedical studies such as ALSPAC and 1958BC. There was a particular focus on potential for vertical DataSHIELD for record linkage and including plans for implementation on SAIL, as developed under CIPHER, Farr Scotland and ALSPAC
Year(s) Of Engagement Activity 2016
URL http://www.datashield.ac.uk
 
Description World Universities Network Workshop: Data Analysis with Privacy Protection for Epidemiological Research (DAPPER). Bristol, August 2016 - a Satellite workshop of International Population Data Linkage Conference, Swansea, Wales. 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact I led the workshop and gave two lectures. The workshop focused on the importance and challenges associated with largescale sharing and co-analysis of biomedical/health/social data - particularly data that might be classified as sensitive. This pushed forward international discussion of a number of strategies for taking forward new approaches (including governance) and tools for managing, sharing and co-analysing sensitive data in the biomedical, health and social sciences

The workshop has catalysed a follow-up workshop in the coming year.
Year(s) Of Engagement Activity 2016
URL http://www.wun.ac.uk/wun/research/view/dapper-data-analysis-with-privacy-protection-for-epidemiologi...