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Making Personal Records Accessible
Prof. Cathy Humphreys and Dr Margaret Kertesz
University of Melbourne
The Life Story Pyramid
Think
Tank
Archivists
eScholarship Research Centre
Computer Scientists
Social Work Researchers
Ethicists
Out-of-Home Care professionals Young People
Working in the cloud: Making personal records for children in care accessible.
? Young people as co-creators of the record
? Personal control
? Consent
? Legitimate uses of the ‘virtual locker’
? Data security / Confidentiality
? Who has access?
? ID verification procedure
? When are access rights revoked for adults?
? Server in Victoria
? Archiving Standards
? Sustainability
? Exit Strategy
Dr Margaret Kertesz 9035 8508
mkertesz@unimelb.edu.au
Prof. Cathy Humphreys 8344 9427
cathy.humphreys@unimelb.edu.au
Dept of Social Work, University of Melbourne
Working in the cloud: Making personal records for children in care accessible.
Strand A:
Archives, Records and
Digital Technologies
Strand B:
Current Practice
Strand C:
Historical Research
Strand D:
Consumer Perspectives
Who Am I?
? Investigated the role of records in the identity construction of
children and young people in care and of adults who were in care as
children.
? Identity is based on family background, relationships and
experiences and changes over time
? Children in care often don’t have anyone to tell them their family
history
? Out of home care records can support identity by filling this gap
? Can this kind of technology be built?
? Where should the contents be stored?
? Sustainability
? User interface
Ad

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Working in the cloud: Making personal records for children in care accessible.

  • 1. Making Personal Records Accessible Prof. Cathy Humphreys and Dr Margaret Kertesz University of Melbourne
  • 2. The Life Story Pyramid
  • 3. Think Tank Archivists eScholarship Research Centre Computer Scientists Social Work Researchers Ethicists Out-of-Home Care professionals Young People
  • 5. ? Young people as co-creators of the record ? Personal control ? Consent ? Legitimate uses of the ‘virtual locker’
  • 6. ? Data security / Confidentiality ? Who has access? ? ID verification procedure ? When are access rights revoked for adults?
  • 7. ? Server in Victoria ? Archiving Standards ? Sustainability ? Exit Strategy
  • 8. Dr Margaret Kertesz 9035 8508 mkertesz@unimelb.edu.au Prof. Cathy Humphreys 8344 9427 cathy.humphreys@unimelb.edu.au Dept of Social Work, University of Melbourne
  • 10. Strand A: Archives, Records and Digital Technologies Strand B: Current Practice Strand C: Historical Research Strand D: Consumer Perspectives Who Am I?
  • 11. ? Investigated the role of records in the identity construction of children and young people in care and of adults who were in care as children. ? Identity is based on family background, relationships and experiences and changes over time ? Children in care often don’t have anyone to tell them their family history ? Out of home care records can support identity by filling this gap
  • 12. ? Can this kind of technology be built? ? Where should the contents be stored? ? Sustainability ? User interface

Editor's Notes

  • #2: Introduction: Working in the Cloud – a 1 year exploratory study, funded by a seeding grant. Which has aimed to establish the viability of the concept of the virtual locker – a “virtual” / in the cloud storage space for the personal documents of people who are or have experienced out of home care. I will briefly talk about the history and background to this project and then I want to share with you the dilemmas and challenges raised by the project. ?
  • #3: The Who am I? project (2008-12) investigated the role played by records and archives in the identity construction of children and young people in care and of adults who were in care as children. Children growing up in out of home care often don’t have access to the rich oral history, the family photo albums and so on that most of us do. For these children, for the adults they grow into, out of home care records may be the only resource available to provide information about their families, their origins and their lives before and during care. Pyramid – a way of helping us see the relationship between records and identity. In order to make sense of childhood experiences, we first need to have good information about what happened and why Explain information gathering levels. Only with this foundation can we engage in therapy or make our own meanings – develop a positive sense of self. Many children and young people are not ready for this step while in care – the Who am I project was concerned with how records are created and stored so that they can be readily accessed at a later date. Who am I? findings Basic identity records - not all kids have birth certificates etc. Records with essential information are not being shared as kids move from placement to placement Photos and other life story materials are sometimes left behind when placements end – Its easy for kids to lose belongings when they move Records are fragmented Records are not child focussed and do not reflect the lives care leavers remember living. SO we thought - how can we keep records together, easily accessible, relevant to care leavers’ needs? What about a “virtual locker” – a storage space in the cloud – so material did not have to be physically moved around as children moved.
  • #4: THE RESEARCH PROJECT For the WinC project, we set up a multisciplinary project team, which worked as a think tank. - List members The project team has met regularly and has engaged in conceptual discussions, with individual team members providing input and discussion papers from their field of expertise. We brought in expertise as we needed it – Privacy Commission, DHS / Child protection advice We also ran a series of three focus group consultations – three with young people who have experience of out of home care, and three with out of home care workers. These two groups of expert consultants ( representing the users ) contributed to the design of the ‘virtual locker’ and tested a prototype - both groups were enthusiastic about the idea and had lots of creative ideas about how it could be used.
  • #5: OUR CONCEPT OF THE ‘VIRTUAL LOCKER’ (We are still looking for a really good name for it) Three layers Apps – ways of putting stuff into the virtual locker – photos, scanned documents, etc. One central index Several storage repositories behind the index – some in the cloud / cyberspace Index – not just an index of what is stored in the virtual locker – also a list of locations (eg. birth certificate original) I now want to talk about some of the issues and challenges that have arisen. The more we delved into what a ‘virtual locker’ might involve, the more complex things became. We found we were simultaneously trying to solve a range of problems.
  • #6: We worked on the principle that ethical considerations should be built into the project from the beginning Co-creation – a principle developed during the Who am I? project “For me, I think the best way for me to have had the best records that I could have had was for me to have a voice in my records . . . . I just would have liked to have had some input in a story that’s going to be written about me” (Samantha) - We hope that the ‘virtual locker’ would facilitate greater involvement by young people in creating a record of their time in care, and assist workers in this aim as well. Personal Control At what age is a young person expected to be able to exercise informed consent and make independent decisions. From the age of about 14, workers could make an informed assessment of each young person as to when they can act independently without an adult’s guidance. The context matters – age does not necessarily reflect the decision-making competence of a child If risk is involved – this alters the age Consent What is informed consent in this context? Decisions about access, and read/write privileges, editorial rights (deletion cooling off period) Legitimate uses Regulation of uploading unsuitable photos etc. Third party information Requests for access from police or researchers What happens to the data if the young person dies? Who decides?
  • #7: Data Security Where a lot of personal information is stored in one place, there are great opportunities for identity theft Challenge – to ensure data security while providing easy access to authorized people Who has access? Who can put material into the ‘virtual locker’? Who can see it while it is there? Workers / carers assisting the young people, friends and relatives nominated by young person? ID verification procedure Joint key - would provide secure access, a process from negotiated to independent access, and would protect against the destruction of the locker contents. A joint key could be integrated into the design, but activation could be optional. Revoking access rights- for people other than the young person concerned (worker) - Eg when placements change– this needs to work better than the current situation for CRISSP
  • #8: The Technology appears to be straightforward Lots of examples of technical applications that can be copied, but this project has specific issues Where should the contents be stored? the server should be in Australia (preferably Victoria) and under independent auspices (privacy legislation) Archiving Standards to be met to ensure that the relevant metadata is recorded – so we have a history of the record Sustainability – the material stored in the locker needs to be accessible over (at least) the lifetime of children in care – possibly 70-80 years Governance / Management - Independent auspices (not part of oOHC sector – eg. Chn’s Commissioner)– to hold key (password) There needs to be an exit strategy if the auspicing body is disbanded or can no longer manage the project, so that records are returned to their owners Next Steps: We need to engage an organisation who could be the independent auspicing body – only with this support and sponsorship can the project proceed. This is an opportunity to engage with children and young people in care in a domain which links with the new increasingly digital world.
  • #12: Identity development and how it connects with records The meaning we make of our lives is something we construct from the basis of our physical and genetic attributes, the stories we hear of our origins, and the relationships we have within family, community and culture. These relationships, and our interpretation of them, change over time - the development of identity is a life-long process which is influenced by our experiences (Howe and Feast, 2000, p.175) cited in Winter & Cohen, 2005, p.47). Most people find out about their backgrounds through their parents or other relatives, through family photos and family stories, but kids living in adoptive or permanent care are families are often dislocated from these sources of information. Sometimes the information contained in records is the only resource available to these kids of information about their origins and the details of their childhood before they arrived in a permanent placement. Investigated the role played by records and archives in the health, well-being and identity construction of children and young people in care and of adults who were in care as children.
  • #13: Can this kind of technology be built? Lots of examples of technical applications that can be copied, but this project has specific issues Where should the contents be stored? the server should be in Australia (preferably Victoria) and under independent auspices Sustainability – the material stored in the locker needs to be accessible over (at least) the lifetime of children in care – possibly 70-80 years User interface – what technology are young people using, and what technology do young people and workers have access to? Texting, facebook, instagram, snapchat BUT Young people – lack of money for internet at home, or smart phones Workers – agencies do not provide up to date technology, no smartphones Eg. USB ports don’t function in residential units