How #ResBaz provides cost-effective digital literacy PhD training for communities

Dr Chris Tuke Flanders1, Dr Tyne Daile Sumner1

1University of Melbourne, Melbourne, Australia

 

The Research Bazaar (est at UniMelb) is now in its 5th year as a global community with over 17 participating Universities worldwide.  #ResBaz is a grassroots effort to improve how PhDs, postgrads and postdocs can keep up to speed with the ever changing digital tools+data ecosystem.  The community continues to grow founded by its pedagogical principles of: (i) for research by researchers, (ii) blended community learning (face-to-face and digital communities), and (iii) helping you -the researcher- work smarter, not harder.  Come learn: (a) how UniMelb has made an IT department one of the most sociable learning places on campus, and (b) how you can establish #ResBaz on your campus (and get the funding support from your Uni to do so).  Free (Open Access) digital copies of the ‘Research Bazaar Cookbook’ will be given away to participants.


Biography:

Christina is the Training and Development Manager for Research Platforms at the University of Melbourne. Christina edited the textbook The Digital Research Skills Cookbook.

Dr Tyne Sumner is the Senior Research Community Coordinator for Omeka and runs events and training in digital curation, data management, and archiving. She has published articles on the Cold War, confessional poetry, and the relationship between astronomy and typography in the poetry of e.e.cummings. She also has a forthcoming book chapter entitled “Omeka: Make Your Own Museum” out with Indiana University Press in 2018. Tyne is passionate about Digital Humanities and telling stories with data.

Untitled Article

Mr Kheeran Dharmawardena1, Mr Paul Box2

1Atlas of Living Australia, Melbourne, Australia, Kheeran.Dharmawardena@csiro.au

2CSIRO, Black Mountain, Australia, Paul.J.Box@csiro.au

A BoF was held on Problem and Solution patterns on Community Development at the eResearch Australiasia conference in 2017.  During this session a number of patterns were identified and described.  This BoF will build upon the work done at eResearch 2017 and further explore the idea of a pattern library in Community Development around research information infrastructures.

Information infrastructure used by research comprising systems, data, processes and people providing this infrastructure (provider community) has evolved to underpin specific communities (user communities) with specialised software and hardware requirements. Underpinning research user communities is challenging: software and data in cutting edge areas advances quickly meaning that software infrastructure can fast become irrelevant; research is naturally competitive, which makes collaboration a finely tuned balance; and building models for sustainability is challenging.

A pattern language is a method of describing good design practices or patterns of useful organization and through a set of interconnected patterns, attempt to express a deeper understanding of the relationship between different patterns.

Some patterns identified to-date include:

  • Connecting rowing and steering – governance is the decision making process that sets the ‘rules of the game’ to ‘steer’ collective activity’. Individual orgs and people do the heavy lifting ‘rowing’ to achieve agreed outcomes. If there is a real or perceived inability to influence decision outcome in governance mechanisms there is likely to be a disincentive to taking action to achieve the outcomes particularly where collaborative efforts are in-kind volunteered effort, rather than being centrally funded.
  • Pigs and chicken – decision rights should be allocated in ways that are appropriate to the needs of the community and the respective roles of individual actors. Assigning decision authority – decider (as opposed to decision input roles) can be used to give more voice in collective decision making to those who will have more skin in the implementation game i.e. the ‘pigs’
  • Understanding and leveraging Coalitions of the Willing (COWs) – What incentivizes the folks who drive and contribute to initiatives? How can this be replicated and scaled up?
  • Working with frenemies – Difficult to navigate the various individual and organisational (dis)incentives for collaboration within a competitive environment that hamper eResearch adoption and growth

There are sure to be many more patterns.

This interactive BoF will look at these socio-technical challenges and seek to identify emergent problems & solutions patterns towards building communities that help underpin research communities in the use of information systems.


Biography:

Paul Box leads a CSIRO research team developing interoperable systems of systems or ‘Information Infrastructure’. Paul has worked for more than 25 years in geospatial information technology field.

More recently, Paul has focused attention on addressing the social rather than technical challenges of building Information Infrastructure. Coherent integrated approaches to addressing the social, institutional and economic challenges of infrastructure development are being elaborated through ‘social architecture’.

Mr. Kheeran Dharmawardena, MBA, BComp, is the Program manager at the Atlas of Living Australia.  Kheeran has over 2 decades of experience in delivery of many ICT services within the higher education and research sector, including infrastructure delivery, service delivery, data management, IT & enterprise architecture and eResearch.  He has a special interest in the socio-technical challenges involved in the delivery of effective services.

(orcid.org/0000-0002-4292-7475)

Patterns in Information Infrastructure

Paul Box1, Kheeran Dharmawardena2

1CSIRO, Black Mountain, Australia, Paul.J.Box@csiro.au

2Atlas of Living Australia, Melbourne, Australia, Kheeran.Dharmawardena@csiro.au

 

Information infrastructure used by research comprising systems, data, processes and people providing this infrastructure (provider community) has evolved to underpin specific communities (user communities) with specialised software and hardware requirements. Underpinning research user communities is challenging: software and data in cutting edge areas advances quickly meaning that software infrastructure can fast become irrelevant; research is naturally competitive, which makes collaboration a finely tuned balance; and building models for sustainability is challenging.

A pattern language is a method of describing good design practices or patterns of useful organization and through a set of interconnected patterns, attempt to express a deeper understanding of the relationship between different patterns.

A number of patterns (i.e. the things that we believe hold true across different contexts) that impact achievement of collective goals in information infrastructure have been observed. For example,

  • Connecting rowing and steering – governance is the decision making process that sets the ‘rules of the game’ to ‘steer’ collective activity’. Individual orgs and people do the heavy lifting ‘rowing’ to achieve agreed outcomes. If there is a real or perceived inability to influence decision outcome in governance mechanisms there is likely to be a disincentive to taking action to achieve the outcomes particularly where collaborative efforts are in-kind volunteered effort, rather than being centrally funded.
  • Pigs and chicken – decision rights should be allocated in ways that are appropriate to the needs of the community and the respective roles of individual actors. Assigning decision authority – decider (as opposed to decision input roles) can be used to give more voice in collective decision making to those who will have more skin in the implementation game i.e. the ‘pigs’
  • Understanding and leveraging Coalitions of the Willing (COWs) – What incentivizes the folks who drive and contribute to initiatives? How can this be replicated and scaled up?
  • Working with frenemies – Difficult to navigate the various individual and organisational (dis)incentives for collaboration within a competitive environment that hamper eResearch adoption and growth

There are sure to be many more patterns.

This oral presentation will look at some of these patterns and the work that is being done towards developing an information infrastructure pattern library.


Biography:

Paul Box leads a CSIRO research team developing interoperable systems of systems or ‘Information Infrastructure’. Paul has worked for more than 25 years in geospatial information technology field.

More recently, Paul has focused attention on addressing the social rather than technical challenges of building Information Infrastructure. Coherent integrated approaches to addressing the social, institutional and economic challenges of infrastructure development are being elaborated through ‘social architecture’.

Mr. Kheeran Dharmawardena, MBA, BComp, is the Program manager at the Atlas of Living Australia.  Kheeran has over 2 decades of experience in delivery of many ICT services within the higher education and research sector, including infrastructure delivery, service delivery, data management, IT & enterprise architecture and eResearch.  He has a special interest in the socio-technical challenges involved in the delivery of effective services.

(orcid.org/0000-0002-4292-7475)

Visualising Researcher Collaboration and Linkage using ORCID Data and Research Graph

Mr Melroy Almeida1,Dr Amir Aryani2

1Australian Access Federation, Brisbane, Australia, melroy.almeida@aaf.edu.au

2Research Graph, Melbourne, Australia amir.aryani@researchgraph.org

 

eResearch Infrastructure comprising of systems, data, instruments and people supporting the infrastructure continues to evolve providing higher education institutions and research organisations with specialised research requirements. Australia is entering a period where significant distributed computing and data resources are being made available to researchers and higher education staff [1]. Persistent identifier infrastructure comprising of ORCID iDs (Open Researcher Contributor Identifier), DoI’s (Data object Identifier), RAiD’s (Research Activity Identifier) etc are essential tools for resource and research management but also benefit society by enabling global, interlinked Open Science and ensuring that benefits of research can be distributed and harvested over the long term [2].

As universities and research organisations start evolving into hotbeds for entrepreneurship and discovery [3, p. 2], eResearch is looked to as a vehicle that drives innovation. With today’s global environment where everything is connected, researchers from different institutions often collaborate to work towards common goals concerning technology, research or shared values. Do institutions sharing same socio-political environment have stronger linkages between their staff or will the underlying data paint a different picture?

In this presentation, the Australian Access Federation along with Research Graph, use exploratory data analysis on information obtained from aggregated ORCID records of Australian researchers to visualise collaborations and identify meaningful relationships and linkages between the institutions they work with.

ORCID – Connecting Researchers and Research Outputs

The Australian Access Federation (AAF) operates the Australian ORCID Consortium and collects statistics regarding ORCID integrations done by consortium members as well as the types of integrations.

Out of 40 consortium members, 29 have done different types of integration including custom integrations and integrations with vendor Research Information Management Systems (RIMS) like Symplectic Elements, PURE, ViVO, IRMA, Converis and Scholar One. With over 72% of consortium members with an ORCID integration, it would be interesting to see if any meaningful relationships and linkages can be gained.

Figure 2: ORCID best practices on Integration Implementation pathway

The presentation will look at insights derived from researchers aggregated ORCID data and determine if the strength of the linkages between institutions both domestic and international, are based on geographical or socio-political or common area of research expertise. A prototype is shown in Figure 3.

Figure 3: Prototype for visualisation of collaborations between Australian ORCID Consortium Integration Statistics

Connecting Australian ORCID PROFILES using Research Graph Technology

In a recent article in Nature Scientific Data [4], Research Graph team has published an open-access graph that captured the connections between Australian research datasets, publications and grants linked using Research Data Switchboard. In this work, we use this graph (Figure 3) and other datasets provided by Research Graph partners to map the collaboration between Australian ORCID Consortium members. In addition, Research Graph team has added the integration with Organisation Nodes such as GRID, Ringgold ID and Funders data to enable modelling the links between data and publications to research institutions.

The result of this work is newly established links that demonstrate the following connections

  • publication → researcher (ORCID) → affiliation → university
  • publication → grant → researcher (ORCID) → affiliation → university
  • dataset → researcher (ORCID) → affiliation → university
  • dataset → publication → researcher (ORCID) → university

We have used these connections to build our collaboration network for Australian ORCID Consortium members. In addition to the national level connections, this graph shows strong collaborations with international research institutions such as Cambridge (UK), CERN (Switzerland) and Cornell University (US).

In this talk, we will present the visualisation of this network, and discuss how researchers, research administrators, policymakers, and data managers can access this open graph.

References:

[1]  Department of Education and A. G. Training, “Government response to 2016 National Research Infrastructure Roadmap | Department of Education and Training.” [Online]. Available: https://www.education.gov.au/government-response-2016-national-research-infrastructure-roadmap. [Accessed: 23-May-2018].

[2]  A. Dappert, A. Farquhar, R. Kotarski, and K. Hewlett, “Connecting the Persistent Identifier Ecosystem: Building the Technical and Human Infrastructure for Open Research,” Data Science Journal, vol. 16, no. 0, p. 28, Jun. 2017.

[3]  “NMC Horizon Report Preview 2018.” [Online]. Available: https://library.educause.edu/resources/2018/4/nmc-horizon-report-preview-2018. [Accessed: 23-May-2018].

[4]  A. Aryani, M. Poblet, K. Unsworth, J. Wang, B. Evans, A. Devaraju, B. Hausstein, P. Klas, B.Zapilko, S. Kaplun, “A Research Graph dataset for connecting research data repositories using RD-Switchboard”, Nature Scientific Data, Volume 5, Pages 180099, 2018, http://dx.doi.org/10.1038/sdata.2018.99


Biography:

Melroy Almeida currently works at the Australian Access Federation (AAF) as their ORCID Technical Support Analyst. AAF is the consortium lead for the Australian ORCID Consortium and Melroy works with the Australian ORCID Consortium members on their ORCID implementations as well as assists them in planning their communication and engagement strategy.  Melroy has formal qualifications in information technology (M.InfoTech) and engineering (B.Tech) and over 10 years’ experience delivering information technology solutions within the higher education sector.

ILIFU RDM Research: Developing the workforce of a national data node

Dr Dale Peters1, Dr Elisha Chiware2

1UCT, Cape Town, South Africa, dale.peters@uct.ac.za

2CPUT, Cape Town, South Africa, ChiwareE@cput.ac.za

 

ILIFU is the isiXhosa word for Cloud, an apt representation of the first node in the data infrastructure funded by the Department of Science and Technology to support the National Integrated Cyberinfrastructure System of South Africa.  This presentation will provide an overview of the ILIFU model of shared infrastructure as a data-intensive research facility for big data management, storage and analysis. It will focus primarily on the research data management (RDM) research component of the project from conception to current operationalisation.

Preliminary findings will be shared with the community to raise awareness of the project, its methodology and its structure, designed to facilitate cross-institutional collaboration.  The overall project has a strong emphasis on human capital development, to develop the workforce required to operate the regional data node. Engagement with researchers in designated domains of astronomy and bioinformatics enable the collaborative development of policies and guidelines to support users of the infrastructure.  Significantly, the RDM research project fulfils an important function in support of institutional capacity building across participating institutions, where project findings will serve to promote institutional policy implementation and service development.

The presentation will offer insights into issues of data management, data governance, and the interaction between scientists and information professionals in building an African data infrastructure.

Keywords: Research data management; Policies; Guidelines; Collaboration; Shared infrastructure.

  1. Outline
  • ILIFU project overview

Cloud Infrastructure

Science – Astronomy and Bioinformatics

RDM research project

  • Objectives of RDM project Software platform

RDM services

  • RDM Project methodology

Structure –  PM team, Work groups – 0,2 FTE, cross pollination

Implementation plan – currently in execution, deliverables

Communication plan – between work groups and external awareness raising

Researcher engagement

  • Preliminary findings: Opportunities

Figshare –  SAAS license model

New multi-institutional collaboration

Community engagement – conferences, events, NeDICC presentations

Capacity Building

  • Preliminary findings: Challenges

RDM learning curve

Time pressure of project work

Remote collaboration –technical challenges with Skype, Slack

Institutional participation- varied qualifications, management of 0,2 FTE

  • Discussion

Limited proposal planning period – application of initial capabilities survey

Team selection and specialisation needed more attention

Work in progress – assigning responsibilities, enabling growing areas of specialisation

National benefits – figshare brokering service model, data management guidelines for relevant domains

  1. References

[1]. http://www.researchsupport.uct.ac.za/ilifu


Biography:

Dr Dale Peters is Director of eResearch at the University of Cape Town, provisioning networked infrastructure tools and services to support innovative research practice in data-intensive science. She convened the Work Group for the Data Intensive Research Initiatives of South Africa (DIRISA), established in the National Integrated Cyber-Infrastructure System (NICIS) in 2013. She has served on international expert groups to identify principles and potential policy actions to promote open and sustainable international data networks. https://orcid.org/0000-0002-4160-3874

Elisha R. T. Chiware is the Director of CPUT Libraries at Cape Peninsula University of Technology. He has worked on the development of a national statistics database for academic libraries in South Africa and he is currently involved in DIRISA as the Chair of the Research Data Management and Open Science Research Group. He has worked in academic libraries in Namibia, Botswana and Zimbabwe and South Africa. https://orcid.org/0000-0002-8375-9156

Using Pathways Forums to inform future initiatives for your research field

Mrs Lauren Attana1

1eRSA, Thebarton, Australia

 

The Pathways series was initially developed by eRSA in 2016 with the goal to connect both academics and industry professionals to the latest, innovative, eResearch tools and services around the nation. The aim of these forums was to encourage the community to come together and discuss a range of subjects including training, expert support mechanisms, technology platforms, data or infrastructure. Since its commencement, eRSA has executed this concept into multiple research disciplines, including the Genomics, Humanites and EcoSciences space, with each series of events being continually refined.

With advocacy and community engagement activities being integral to the concept, the community gathered at these events are able to articulate ideas for further research support without being restrictive and essentially informing on future initiatives.

This seminar will walk through:

  • The origin of the Pathways concept and how they evolved to become a part of nationally recognised initiatives
  • The ‘recipe’ for organising a Pathways event
  • How its success to date has benefited multiple research communities

I will also delve into ‘What’s next for the Pathways Forums’ and how you can leverage this concept for your own field of research.

This session is ideal anyone who is interested in leveraging engagement of those in their research field and use it to improve best practice and inform on future thinking.


Biography:

Lauren Attana is the Marketing Team Leader at eRSA. She regularly works with researchers and commercial users as well as with a national network of cross functional institutions, departments and organisations.

Lauren has a Bachelor of Public Relations from the University of South Australia where she majored in Marketing. Previously from a financial planning background, she has extensive experience in implementing and overseeing internal and external marketing and communications programs.

At eRSA, she is heavily involved in projects relating to digital marketing, social media and internal communications.

Working within the Marketing team, she regularly assists with the delivery of creative and innovative marketing and communication solutions for local and national projects for eRSA, Nectar and various other institutions.

Upskilling library staff: from zero to heroes

Steven Chang1, Rachel Salby2, Janice Chan3, Julie Toohey4, Susannah Bacon5

1La Trobe University, Melbourne, Australia, s.chang@latrobe.edu.au

2La Trobe University, Melbourne, Australia, r.salby@latrobe.edu.au

3Curtin University, Perth, Australia, janice.chan@curtin.edu.au

4Griffith University, Gold Coast, Australia, julie.toohey@griffith.edu.au

5Australian Research Data Commons (ARDC), Canberra, Australia susannah.bacon@ardc.edu.au

 

BACKGROUND

Information professionals and library staff are taking on an increasingly central role in developing research data management services. This trend means institutions have an imperative to upskill staff and empower them to cultivate expertise in this area. The wider library and research data community have emphasized the need for librarians to develop solid research data management skills, as seen in the 2016 Ithaka S+R Library Survey 2016 [1], European Union’s RECODE: Open Access to Research Data [2], initiatives such as the ALIA Research Data specialization, and other literature.

Key skillsets include supporting researchers and institutions with data discovery, data citation, data storage, data formats, collaboration, research data management plans, DOIs, FAIR principles, copyright and intellectual property, sensitive data,  metadata management, data retention, open access, publishing and sharing data. It is vital that library staff with no prior research data management or research background can gain the knowledge to feel confident supporting and advising researchers on best practice.

A common challenge in upskilling staff comes from overcoming staff resistance and fear of new technology, according to the literature [3, 4, 5]. The experience from University of California, Berkeley, illustrated that, while many libraries have made concerted efforts to train staff in research data management, the success of these programs depends on how closely aligned staff feel with the training [6]. It is therefore important that training programs allow staff to feel comfortable with this new domain of skills and engage staff with hands-on experience that they can relate to their work.

In Australia, a variety of programs have been used, including the 23 Research Data Things developed by the Australian National Data Service (ANDS, now known as Australian Research Data Commons), Library Carpentry workshops, using a variety of mediums including online modules, face-to-face classes, and blended learning. La Trobe University has developed an extensive evidence-based upskilling model that goes beyond single training sessions and incorporates a series of hands-on training, living documentation, encouraging ambassadors and champions, and developing a participatory community of practice. These initiatives have encouraged librarians to become ambassadors, create communities of practice, and involve library voices in events such as ANDS webinars, Research Bazaar (ResBaz) events, and Research Support Community Days. We will discuss the outcomes of these programs for staff knowledge and confidence at this session.

SESSION FORMAT

1 hour ‘Birds of a Feather’ session focusing on informal discussion and reflection. The conveners will chair the session, which will also include four brief lightning talks.

Each lightning talk will provide an overview of the ways each institution has trained library staff in research data management and overcome barriers that prevent staff from embracing these new roles. Attendees are encouraged to informally share their own experiences and reflections. The focus will be on collectively sharing reflections on best practice. We also want to hear about a range of outcomes, including poor take-up of programs and key challenges faced. An assigned facilitator will take notes reviewing the main discussion points, and collate these to circulate after the conference is over.

This session is targeted at both library leadership and managers, as well as newcomers to data librarianship, plus any others who are interested in identifying the best approaches to learning and teaching research data management for support personnel.

 

REFERENCES

  1. Wolff-Eisenberg, C. (2017). US Library Survey 2016. New York : Ithaka.
  1. RECODE Project Consortium. (2014).  RECODE: Policy Recommendations for Open Access to Research Data.Luxembourg: Office for Official Publications of the European Communities. DOI: 5281/zenodo.50863
  1. Blessinger, K. & Hrycaj, P. (2013). Workplace Culture in Academic Libraries: The Early 21st Century.  Boston: Emerald Publishing.
  1. Matteson, M. & Hines, S. (2017). Emotion in the Library Workplace. Boston: Emerald Publishing. https://doi.org/10.18665/sr.303066
  1. Edwards, McClean, & Cleave (2016, February 10th), “Have you tried turning it off and on again?” Exploring a state-wide ICT skills training project for Victorian public library staff, VALA2016, Melbourne. Melbourne: VALA. https://www.vala.org.au/vala2016-proceedings/vala2016-session-10-edwards/
  1. Wittenberg, J., Sackmann, A. & Jaffe, R. (2018). Situating Expertise in Practice: Domain-Based Data Management Training for Liaison Librarians. Journal of Academic Librarianship, 44(3), 323-329. https://doi.org/10.1016/j.acalib.2018.04.004

 


Biographies:

Rachel Salby is Acting Senior Coordinator, Research Data at La Trobe University Library. She has particular expertise in research data management, project management, and library systems. She is a passionate advocate for improving researcher access to data and information.

https://orcid.org/0000-0002-8955-3589

Steven Chang is Research Data Outreach Officer at La Trobe University Library. He is interested in open scholarship, systematic review methodology, research data management, and health librarianship. Steven comes from a medical librarian background, and is the former editor of the publication Health Inform.

https://orcid.org/0000-0002-3193-7969

Janice Chan is Coordinator, Research Services at Curtin University, Perth, Western Australia. Janice’s experience is in repository management and scholarly communications. She is interested in open research, metrics and impact assessment, research data management, library-led publishing, data analysis and visualisation, and innovative practice in library service delivery.

https://orcid.org/0000-0001-7300-3489

Julie has worked in academic libraries for 23 years and is currently the Health Discipline Librarian at Griffith University, Gold Coast campus.  Julie is passionate about research data management practices and is in the process of publishing her first co-authored journal article. Throughout 2016, Julie co-facilitated the Australian National Data Services 23 Things (research data) Health and Medical Data Community Group webinar series and is a member of the Queensland University Libraries Office of Cooperation (QULOC) Research Support Working Party.

https://orcid.org/0000-0002-4249-8180

Susannah has worked for ANDS (now ARDC) since 2010 where she has been involved in community building, outreach and training, website content delivery, webinars and all aspects of communications. She was a key person in the delivery of the internationally renowned 23 (research data) Things program that was directed specifically at the librarians community, and is constantly ensuring that it remains relevant and up to date. She holds a Bachelors of Agricultural Science, a Grad Dip in land rehabilitation and a Masters in Social Research.

https://orcid.org/0000-0002-8606-0703

Considering social licence to use personal health information for research: The Consumer Opinions about Research Data Sharing (CORDS) study

Michelle Krahe1, Eleanor Milligan2, Sheena Reilly3

1Menzies Health Institute Queensland, Griffith University, Gold Coast, Australia, m.krahe@griffith.edu.au

2School of Medicine, Griffith University, Gold Coast, Australia, e.milligan@griffith.edu.au

3Health Group, Griffith University, Gold Coast, Australia, s.reilly@griffith.edu.au

 

BACKGROUND

Health data which is routinely collected during the course of patient care, is a valuable resource to the advancement of research and can be an effective and efficient alternative to performing large-scale and costly clinical studies [1, 2]. Together with the growing capabilities of data analytics and our increasing capacity to link discrete datasets, the enhanced use of health data presents a remarkable opportunity for research [3-5].

In Australia, surveys indicate strong support for the use of health data in research [6], particularly when it is used for public benefit and there is trust in the organisation or individual/s conducting the research [7, 8]. For example, just under half of Australians were comfortable with government agencies using their personal data for research or policy-making [9]. Understanding consumer perspectives about the use of personal health information for research purposes is both implicit to achieving data reform in Australia, and establish a ‘social licence’ for data sharing and reuse.

To date, most of what we know about public perceptions of health research have centered on matters of privacy, consent, autonomy and use of data [10, 11], but the precursors that encourage people to share (or not share) can also be explained by the influence of social legitimacy and credibility in the presence or absence of risk or trust. We propose that examining public perceptions specifically through the lens of risk perception and trust as a measure of willingness to share data, may inform more effective strategies to engage and foster a social licence for the use of personal health information in research.

METHODS

The Consumer Opinions about Research Data Sharing (CORDS) study, was a prospective cross-sectional survey with 249 participants who were attending a large tertiary health clinic located on the Gold Coast campus of Griffith University, Australia. The survey was designed to explore consumer opinions about: (i) exposure and value of research; (ii) willingness to share personal health information; (iii) perceived risk of data-linkage research; and (iv) trust that data will be used responsibly.

Descriptive statistics were applied questions containing Likert-type scales were analysed as nominal data and expressed as counts and percentages with weighted means ± SD. Analysis of the survey data used the chi-square (c2) test of independence to determine the presence of an association. All analyses were conducted using SPSS statistics (version 25.0, IBM) and the study was approved by the Griffith University Human Research Ethics Committee (Ref.2017/818).

FINDINGS

The majority of respondents had never participated in research (61%), despite strong consensus and explicit agreement that research was ‘very important’ to Australia’s future (weighted mean of 4.86 ± 0.40), and 80% indicated they would be ‘likely’ to participate in the future.

The relationship between perceived risk of sharing personal health information and willingness to share personal health information was not significant (p=0.53), with most participants (76%) categorised as risk assured (perceived risk was low or very low) and just over two thirds were willing to share their data for research.

Participants expressed less willingness towards sharing items of information which are more sensitive, intrusive or identifiable (i.e. personal or location details). The relationship between trust in others to use data responsibly and the perception of risk involved in sharing personal health information, is illustrated in Figure 1. Overall, findings suggest three key influences of consumer willingness to share data: (i) data type; (ii) risk perception; and (iii) trust in who is accessing the data.

Figure 1. Trust (                                                     ) in different professions and entities to use personal health information responsibly, as distributed by risk (concerned, aware and assured) perceived to be related to participation in research that involves personal health information. The X-axis represents the proportion of respondents in each trust category. Markers were not shown for trust categories that were zero.

CONCLUSION

This study suggests that while consumers view sharing personal health information for research mostly positively, their willingness to share is not exclusively motivated by perceived risk. Where individuals perceive risk in environments of low trust, support for sharing data decreases.

This presentation will conclude by examining potential strategies to address factors which are important to securing a social licence for the use of data in future health and medical research. These might include strategies for building trust and credibility between the public and entities accessing and using the data; establishing confidence in the research endeavour through a shared understanding of the benefits that flow from greater access and use of health data (i.e. mitigating perceived risks); or addressing public concern related to the sensitivity and regulation of different types of data.

REFERENCES

  • Brook, E.L., D.L. Rosman, and C.D.J. Holman, Public good through data linkage: measuring research outputs from the Western Australian Data Linkage System. Australian and New Zealand Journal of Public Health, 2008. 32(1): p. 19-23.
  1. Sibthorpe, B., E. Kliewer, and L. Smith, Record linkage in Australian epidemiological research: health benefits, privacy safeguards and future potential. Aust J Public Health, 1995. 19(3): p. 250-6.
  2. Holman, C.D., et al., A decade of data linkage in Western Australia: strategic design, applications and benefits of the WA data linkage system. Aust Health Rev, 2008. 32(4): p. 766-77.
  3. Jutte, D.P., L.L. Roos, and M.D. Brownell, Administrative record linkage as a tool for public health research. Annu Rev Public Health, 2011. 32: p. 91-108.
  4. Kelman, C.W. and A.J. Bass, Research use of linked health data – a best practice protocol. Australian and New Zealand Journal of Public Health, 2002. 26(3): p. 251-255.
  5. Research Australia Ltd., Australia Speaks Opinion Polling 2017, in Australia speaks! 2017.
  6. Aitken, M., et al., Public responses to the sharing and linkage of health data for research purposes: a systematic review and thematic synthesis of qualitative studies. BMC Med Ethics, 2016. 17(1): p. 73.
  7. Ohm, P., Broken promises of privacy: Responding to the surprising failure of anonymization. UCLA Law Review, 2010. 57(6): p. 1701-1777.
  8. Van Souwe, J., et al., Australian community attitudes to privacy survey, Office of the Australian Information Commissioner, Editor. 2017. p. 51.
  9. Bachmann, R., N. Gillespie, and R. Priem, Repairing trust in organizations and institutions: Toward a conceptual framework. Organization Studies, 2015. 36(9): p. 1123-1142.
  10. King, T., L. Brankovic, and P. Gillard, Perspectives of Australian adults about protecting the privacy of their health information in statistical databases. Int J Med Inform, 2012. 81(4): p. 279-89.

Biography:

Dr Michelle Krahe is a research professional with a passion for strategy, development and innovation in health. She is a Senior Research Fellow within the Health Executive at Griffith University and a Visiting Research Fellow with Gold Coast University Hospital. Michelle is responsible for the development and management of research initiatives for the Pro Vice Chancellor (Health) and has over 12 years’ experience in clinical research, working in academia, health services and research institutes.

Ethics and responsibility in data-intensive research

Fiona Tweedie1, Mark Fallu 2

1University of Melbourne, Australia, ftweedie@unimelb.edu.au

2University of Melbourne, Australia, mark.fallu@unimelb.edu.au

 

Ethics in a data-intensive environment

As more data becomes available to researchers and advances in analytics make it possible to use data in novel ways, new risks and challenges arise that are not adequately addressed by existing tools and procedures. Privacy regulations cover the use of personal information and ethics committees provide guidance in research using human subjects.
Research using behavioural data, however, may not directly involve personal information or require the participation of human subjects, meaning that these established processes may not be triggered or provide adequate guidance if they are. There is, however, a growing recognition that insufficiently critical uses of big data and AI can have real and detrimental effects on individuals [1].

The Digital and Data team at the University of Melbourne was established to build future readiness through coordinated investment into digital and data capabilities. Creating an environment where data users are confident to experiment with data, supported by clear frameworks and robust ethical guard-rails, is essential to building the innovative organisations that will thrive in the future. This presentation will showcase the Data Ethics Canvas being developed by Digital and Data to enable the teams behind data-intensive projects to identify potential harms and mitigate the possibility of unintended consequences flowing from their work.

REFERENCES

  1. See, for instance, Cathy O’Neil Weapons of Math Destruction, (Crown, 2016), Sara Wachter-Boettcher, Technically Wrong, (W.W. Norton, 2017) and Safiya Umoja Noble, Algorithms of Oppression (NYU Press, 2018)

Biographies:

Fiona Tweedie is the data policy and strategy advisor in the Digital and Data team at the University of Melbourne. She has previously worked in data management and advice roles in the private and public sectors, including time working on open data policy at the Office of the Australian Information Commissioner. She has a PhD in Ancient History.

Mark Fallu is a higher education research technology specialist with a deep history of building tools and developing policy to support research. He is the research lead for Digital and Data at UoM. His current focus is on developing and implementing a roadmap for research business administration and data management. Mark is a practical innovator and a passionate communicator, with special interests in semantic web, data analysis and visualisation.

Scientific Programmers at NeSI growing researcher capability

Dr Georgina Rae1, Dr Chris Scott2, Dr Alexander Pletzer3, Dr Wolfgang Hayek4,

1New Zealand eScience Infrastructure, Auckland, New Zealand, georgina.rae@nesi.org.nz

2New Zealand eScience Infrastructure, Auckland, New Zealand, chris.scott@nesi.org.nz

3New Zealand eScience Infrastructure, Wellington, New Zealand, alexander.pletzer@nesi.org.nz

4New Zealand eScience Infrastructure & National Institute of Water and Atmospheric Research, Wellington, New Zealand, wolfgang.hayek@nesi.org.nz

 

The New Zealand eScience Infrastructure (NeSI) is New Zealand’s High Performance Computing (HPC) provider and has a vision to grow the capability of New Zealand researchers through the use of digital tools. NeSI’s team includes highly skilled Scientific Programmers who work alongside researchers via training and consultancy projects, providing access to computational skills they wouldn’t otherwise have. This presentation will provide some insight into how NeSI runs these national services with recent case studies, including delving into some of our successes and the challenges we face.


Biography:

Georgina is Engagement Manager at NeSI where she leads outreach, training, consultancy and stakeholder engagement activities. She has a background in molecular biology and has also worked in intellectual property and commercialisation.

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