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MIRRA: Memory – Identity – Rights in Records – Access

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But what does it all mean? A first attempt at coding

23 July 2018

We have been out and about gathering ‘data’ for the project since March.  This mostly consists of transcripts of interviews and focus groups with care leavers, social care practitioners, information practitioners and academic researchers, as well as piles of post-it notes and flip-chart papers from collaborative workshops.  So far we have spoken to over 50 people and are sitting on a mountain of 150,000 words, and that’s just the beginning with plenty more sessions planned between now and the end of the year.  Ultimately all of this will be analysed and interpreted to form the basis of the guidance, toolkits, conference papers and articles that we will produce during the project.  But where do you start and how do you manage the process?

This kind of data doesn’t lend itself to statistical analysis, so instead we’re using a well-established approach to qualitative data called coding. This involves reading through each interview or focus group multiple times highlighting or tagging words, sentences and paragraphs that are significant to our research themes.  We use a piece of software called Nvivo to capture this process, which allows us to build up a rich and complex picture. It also means different members of the research team can work on the same data, layering up our diverse perspectives.  Later on the software will help us to manipulate the codes or tags, looking at patterns and themes in the data.  We can also use it to create visualisations and diagrams.

A critical part of this process is establishing a coding framework: the initial set of codes that we will use to shape the analysis.  Over time the coding framework will take on a life of its own, growing as we work through the data, but we have to start from somewhere.  At the beginning of July the whole research team got together to start building the framework.  During the workshop we began this process by working intensively on a sample of data extracts.  Wielding highlighters and post-it notes we marked up and commented on things that struck us as interesting and relevant in the context of the research questions.

The benefit of doing this as a team is the different viewpoints it captures at an early stage. Coding is a very individual process – every person responds to a transcript based on their own interests and instincts. Eight people will code a single paragraph in eight different ways, seeing and hearing different things.

In total we looked at extended extracts from three interviews and focus groups, to build up a good basis for designing the coding framework. My job was to take these sheets away and digest them into a structure of codes that can be input into NVivo. I used a good old spider diagram to collate and group the words and phrases that the group generated.  In this way I was able to identify four key areas: Access, Content of Records, Regulation and Change.  Below is the diagram for Access, by far the most developed of the areas. The highlighted words/phrases are taken directly from the coding exercise; the un-highlighted codes were generated from a recorded discussion we had later in the workshop.

This looks very messy and chaotic at the moment, but once it has been uploaded into NVivo it looks very neat. We can start using it to code transcripts immediately, like this one from a contribution by a social care practitioner. You can see how sections have been highlighted on the left and mapped to codes on the right. Often two, three or more themes overlap as they do here.

Now that we have our initial coding framework we can begin the process of working systematically through our data in this way in earnest, which should keep us nice and busy until the beginning of next year.

Reflecting on information rights for care leavers in a complex legal world

Elizabeth JLomas10 July 2018

On the 25th May 2018 the General Data Protection Regulation came into force across the European Union. This legislation was enshrined into UK law through the Data Protection Act 2018. Together these laws are intended to give greater protections and rights to individuals.

All organisations that manage ‘personal data’ (and what business, charity or public authority does not!) must demonstrate that they do so appropriately. This is termed ‘privacy by design’. It places the onus on organisations to proactively consider their information management processes and the documentation of these processes. The legislation brings in far higher penalties for failing to comply with data protection law (up to 20 million Euros or 4% of turnover whichever is greater) and as such it is evident that organisations are seemingly taking notice.

As guidance emerges on the implementation and bedding down of new best practices under these laws, key stakeholders need to be part of the discussions around the management and use of their information. As a result of this legislation, it is to be hoped that better care will be taken of records as the penalties for the mismanagement or loss of information are significant. To lose the file of a care leaver could cause significant damage or distress and as such is likely to be judged harshly. However, ‘privacy by design’ and the increasing reliance on documented risk assessments may mean that organisations will proactively destroy much more personal information unless they are given rigorous reasons why information needs to be kept. Whilst the records of those who are formally defined as ‘Care Leavers’ (https://www.wigan.gov.uk/Resident/Health-Social-Care/Children-and-young-people/Care-leavers/Who-is-a-care-leaver.aspx) are legally required for 75 years from the date of the record, the records of children who have a more complex picture of social care are not necessarily given such strong protections and may be destroyed far earlier. It is important to ensure that local authorities do take into account the significance of these records to individuals as sometimes they are the only affirmation of childhood memories albeit that many may not feel a need or indeed ready to access this information for decades.

Those who are hoping that the new laws will enhance their access rights may be somewhat disappointed. The concept to access to the records of children who have been in care was enshrined in law through the case of Gaskin v UK (1989) 12 EHRR 36 which relied on Article 8 of the Human Rights Act to make the case for access given that this entitles an individual to respect for private and family life. However, when authorities review files they are required to consider the duties of confidentiality owed to other parties where their information is also on record. This is a balancing exercise which is often subjective. It would aid this process if clearer guidance were provided to enable an authority to weight the Care Leavers’ rights in these cases and thus err on the side of release. Some authorities do take this stance given that the damage or distress caused to an individual when information is withheld is not insignificant.

Finally, it is to be acknowledged that many Care Leavers will not want ‘the State’ to retain the record of their childhood and may be hopeful that the ‘Right to be Forgotten’ under the law will enable them to request that their files will be destroyed. Sadly, the right to be forgotten is quite limited. Where authorities have a legal basis for retaining the information and in certain cases a legal responsibility to do so it is unlikely the information will be destroyed. If records have been formally archived in accordance with the exemptions provided for ‘archiving in the public interest’ then there is an exemption from the right to be forgotten. There is also a potential exemption from subject access requests e.g.  depending on the extent to which the record is accessible/structured.  The new draft archival guidance in this sphere states, that whilst archives may not be legally required to respond a subject access request they can choose to do so “especially when an individual’s rights or entitlements seem to be at stake”. The guidance is currently open for comment at http://www.nationalarchives.gov.uk/documents/information-management/guide-for-public-comment.pdf .

In conclusion, whilst the new legislation offers a step forward more specific guidance is needed to make change. Care leavers are owed more personalized consideration and regulation or at least clearer tailored guidance. I hope that through this project and other related research this can be achieved.

Everyone deserves knowledge of their childhood and control over their own childhood records!

Receiving my care file

2 July 2018

This post was written by Gina Larrisey, a care experienced co-researcher working on the MIRRA project.

I was around twenty six years old when I reached a point where I started to need some answers about my life. Where had I been fostered and who was I with? I was fostered at a young age so my memory of it all was hazy, remembering dribs and drabs. I had asked my Mum at some point who had fostered me but her answer was “ooohhh I don’t know.” I was shocked and upset that she didn’t know where I had been and who was looking after her child. Although there were family issues, hence my being in the care system, I found it hard to stomach that she didn’t even know where I was. There were little gaps that needed filling in and she was my family and the obvious person to have asked. It felt like pieces of jigsaw that I need to put together to complete the picture, but without knowing about that part of my life I couldn’t fit things together.

That is when I wrote to Social Services requesting my care file. I retrieved an address to write to them by popping down to my local council building and asking how I went about it. There had to be a reason for this constant battle with my family. I was told it could be up to three months to hear back but it only took a few weeks whilst the information was gathered. I was then invited to a day centre to view it.

A lovely social worker sat with me when I received my file as did my partner who greatly supported me at the time. Two great big brown envelopes were brought to me containing my life. I sat down and read through a lot of it straight away. There was too much to read all of it at once. There were little yellow labels to mark the most distressing parts. Some things I already knew, some had been dormant memories, others were shocking revelations. It was no wonder I had been so messed up as a child. Reading through it confirmed to me what I needed to know. I was not at fault for what had happened to me. However, I realised that it was no one else’s fault for the things that happened to me in the past either.

The social worker who sat with me was very supportive and very sensitive. I have always appreciated her for that and never regretted receiving my file even though it was a huge thing to deal with. It has helped me to move on in my life and put the pieces of the puzzle together.

Gina has written a book about her care experiences and her life since leaving care if you’d like to know more about her journey. It’s called From Care to Somewhere