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MIRRA: Memory – Identity – Rights in Records – Access



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Reflecting on the MIRRA symposium, 18th July 2019

VictoriaHoyle30 July 2019

Almost two weeks have passed since we welcomed over 100 people to UCL for a day of presentations and discussion about access to records and child social care recordkeeping.  Care leavers, researchers, social care practitioners, regulators, policymakers and records and information professionals all came together to share their experiences and thoughts. It was a powerful, emotional and extremely productive event which gave me lots of things to reflect on. So much so that I have struggled to collect my thoughts and unpick my feelings in the days since.

In large part I think this is because conferences, symposiums and research events are not always (not even often) about feelings and emotions. They are usually focused on findings and outputs, on presentations and publications.  While the symposium included elements of all of those things, it was first and foremost about hearing and responding to the voices of experience.  Throughout the day 11 of our care-experienced co-researchers shared their experiences of accessing and reading their care records. Each focused on the aspect of the MIRRA research that has meant the most to them.  Linda spoke about reliving the day she was taken into care through her records, and the judgemental, inhumane way she was described as a child.  Jackie shared images of her heavily redacted files and spoke about her campaign to change the way Birmingham City Council provides access to records.  Brett talked about his ongoing search to find his care records, including the frustration of being told by multiple local authorities that they have no trace of him.  John-george described the shock of receiving his file without warning through the post, only to discover that his voice was completely absent from it.

The MIRRA Research Team. Left to right: Linda, John-george, Darren, Rosie, Brett, Isa, Gina, Victoria (UCL), Sam, Elizabeth (UCL), Emmanuel and Elizabeth (UCL).

I know from the feedback cards filled in at the end of the day that listening to these testimonies was very important for the practitioners present, many of whom had never heard a care leaver speak about records before.  Feelings and practice were brought together in a way which, we hope, will inspire people to think differently about the day-to-day actions of recording or redacting.  The professional audience was left with some clear and vital messages about how things could be improved.  Rosie, a social worker herself, exhorted the social workers present to be mindful of language and tone when writing records, while Sam was passionate in arguing that everything a corporate parent does, including creating or providing access to records, should come from a place of love.  Gina shared her positive access to records experience and suggested that psychological and practical support should be provided for every care leaver who wants it, no matter their age.  Listening to everyone speak so eloquently and forcefully made me feel incredibly proud and honoured to be able to speak and work alongside the whole team.

In addition to reaching the hearts and changing the minds of those in the room, our goal has always been to embed long term change. There were signs that this may be happening. The event began with a keynote address from Elizabeth Denham, the UK Information Commissioner, who set the scene by acknowledging that information rights, and especially rights of access to information, are about people.  We were particularly pleased to hear her say that subject access requests from care leavers, made under GDPR and the Data Protection Act, should be treated with sensitivity.  She talked about discretion in making redactions, and about the importance of support and care during the process. When taking questions from the audience she reiterated that organisations who hold care records needn’t be risk averse: the Information Commissioner’s Office has never taken action against anyone for the use of discretion while processing care files.  These were very important points, which we intend to continue discussing with the Commissioner’s staff at the ICO as the basis for best practice guidance.

Later in the day we heard from Luke Geoghegan, the Head of Policy and Research at the British Association of Social Workers, about their commitment to publish new practice guidance on recordkeeping, written in collaboration with us.  During the same session David Holmes, the CEO of the charity Family Action, spoke about the work we are doing together to create an interactive website for care leavers (and adopted people) to support them to access and understand care records.  We will be contributing content and advice to this new site, which will be called Family Connect and is due to launch later this year.  Last but certainly not least Darren Coyne shared the latest updates from the Access to Care Records Campaign group, who are currently producing National Standards for Access to Records for Adult Care Leavers.  We have been supporting this work, which we hope will be endorsed by the Department for Education.

At the end of the day, feeling both exhausted and elated, I was left with a strong conviction of the value and potential of research for contributing to positive change.   This change might be at the level of the individual, who alters a small element of their work practice, or at the level of national policy and regulation.  In both cases, it seems to me, the change arises not only through the research findings but by connecting those findings to feelings.  For me the symposium succeeded the most in demonstrating why MIRRA matters, through the voices of the people it matters to most.

The phone rings: A case study

VictoriaHoyle25 June 2019

This post is written by Craig Fees, archivist at the Planned Environment Therapy Trust Archive and Study Centre, 1988-2018. 

The phone rings. Out of the blue: A former child in residential care, from a place whose archives we hold. This is already special. Here is a voice reaching sixty years into the past to bring this children’s community into the present, and bringing a subsequent lifetime with it.

He’s heard we may have his file. We do. Can he come to see it? He can. He’s partly disabled; he will take the train to a nearby station – we have a small rural one I recommend. Can I recommend a taxi firm? No, I will pick him up (and take him back!). We have onsite accommodation if he wanted to stay overnight. No, he wants to come up and go back on the same day. This first conversation lasts the better part of an hour – because I know something about the place and know the names of members of staff and even fellow children as he mentions them, and he wants to talk to someone for whom the place is important and has meaning. It’s fascinating, and I ask whether he might possibly be willing to record such a discussion, if there’s time, when he’s here? The recording would be confidential unless or until he agreed otherwise, having had a copy of the recording (we don’t always have the resources to provide a transcript; but that would be ideal). I explain how it’s held securely, and that people either could or could not see it, depending on what he wished; it would be entirely in his hands. But there might not be time, and it might well be something he would not want to do anyway. But I do want to convey that what he is saying is important, and would be of immense interest to future generations. Or should be! I want him to know that he and his experience are important.

We talk about data protection, and what I will do to make the file available to him: I will go page by page through it, with an eye for third party information which might need to be redacted; I explain the legal parameters guiding redaction; and I explain that because the file is a private document about him, and from my point of view is none of my business,  a) once I have been through the file I am unlikely to remember in any detail what is in it, because I will be reading it instrumentally and not for information about him or his life, and b) I will not redact anything unless it is absolutely legally necessary, because the more detailed and complete the record I can put into his hands, the more value it is likely to have for him. I ask him for three things before I start: some proof that he is who he says he is, so that I don’t release information to someone I shouldn’t; any information he can share about who I might encounter in the file (family members; fellow children; foster carers…),  and if he can let me know whether any are alive or dead; and formal permission to go through his file. Of course he is unlikely to say no to the latter; we both understand that. But it is important to me that he is the one who makes the decision, and gives the permission for this stranger to go into his intimate childhood. It is not just a formality. Are there any charges? No, although as a small charity we never say no to donations. But we don’t want anything to stand between an individual and access to their file.

I meet him at the station. We readjust the car to meet his physical situation. I tell him we have a twenty-five minute ride. We talk: it’s beautiful countryside; he’s come from London. He asks about me, about my background and where I’m coming from, so we talk about that. I tell him I have set up my office with his file, and am happy to be in there with him, or to shut the door and let him have it to himself. He won’t be disturbed if he doesn’t want to be. When we arrive I make coffee and biscuits. I explain the very few redactions I’ve made, how he will know when he comes across them, and what they mean: for example,  in the filing system in his childhood children from the same authority often had papers mixed together, or the children were bundled together into a single piece of correspondence. Since he knew who he travelled to and from the place with (and has mentioned them), I would not remove that kind of information. But where there were personal details about the other child or their home situation, for example, I would.

He elects to be alone with his file. The phone is unplugged, there are no limits on time, and there are no other visitors expected. I will be somewhere around if he needs me. Eventually, he emerges and we talk. He shares his views on his file, and his child’s eye view of its depictions. There are factual inaccuracies in it. Some things have fallen into place for him. We don’t record; it’s not appropriate.  But he invites me to meet him some time for coffee in London. I take him back to the train. We email. We meet in London, and he talks about the place some more, about his life, about the experience of accessing his file, and something of what he learned. He has a second hot chocolate, and I have a second coffee. London is his home ground, and he makes sure I know the best route back to the train. I am in the loop when I hear, from a member of his family some months later, that he has died.

Each request is unique, comes differently, and unfolds in its own particular way. But if done well the underlying philosophy of welcome, of being at the service and disposal of, of adapting to, of making possible, of conveying the meaning and significance of, of learning about and from should be consciously or unconsciously experienced by every person seeking their file, as is a sense of sharing responsibility and of working together. The ultimate source of one’s orientation as an archivist is love, or, more simply, a profound respect and treasuring of people, of records,  and of the possibility when they come together; with a healthy respect for boundaries, and for the potential of traumatic experience to spring surprises, including the surprise of having no bearing at all; the knowledge that archivists are not therapists, but people; and with a fundamental understanding that whatever the emotional dynamics of the encounter with their records, that experience is theirs, and not ours. We are guests in their lives, and the unique privilege of the archivist is to set the stage for their encounter with their file; to provide an environment which is welcoming, informed, and safe; and to be available if and as called for, with the willing understanding that one may not be called or needed at all. Which is excellent; to be invisible and forgotten is a privilege as well.

How can practitioners change records for the better?

VictoriaHoyle17 June 2019

Social care recordkeeping is a complex system, with many dozens of people involved in contributing to, preserving and providing access to just one person’s file.  Multiply that by the 72,000+ children and young people currently in care and there are 100,000s of practitioners involved in producing and maintaining social care records all across the country.  If we’re going to change and improve recordkeeping practice then reaching that audience is a high priority.  Earlier this year we secured an additional £15,000 of funding for the MIRRA project to share our research more widely and talk to social work and information professionals about records’ issues and why they matter.* We started working in close partnership with the British Association of Social Workers (BASW) and the Archives and Records Association (ARA) to reach out to sectors that very rarely talk to one another.

Group exercises, London Workshop, 6th June 2019

As part of a programme of events (including our sold-out conference on 18th July – you can join the waiting list if you didn’t manage to get a place) we recently hosted two workshops with practitioners in London and Manchester.  With over 60 people attending in total, from a range of backgrounds in the public, voluntary and private sectors, from children’s home managers to information governance managers, we generated a lot of brilliant and interesting discussion.  Many of the topics will be familiar: the challenge of depleted budgets and resources, both for Children’s Services and records work; the complexities of digital recording systems; and the legacy of less-than-ideal practices from the past.  At the beginning of the session we premiered a video we have made about the MIRRA project with our care-experienced research team (link coming soon!), which helped to keep the debate rightly focused on the impact records have on care-experienced people.

Visual Minutes from the London Workshop, by Raquel Duran (More Than Minutes).

A visual minute taker joined us at both events to illustrate the conversations as they developed, and help us to see both consensus and actions emerging.  These artworks highlight some of the key priorities the workshops identified, which in turn will help us to develop the resources practitioners need for better recordkeeping. The first step was convincing people they needed to act, and now the second will be providing them with tools to help. This is something I will be focusing on over the next five months as the project comes to the end of its first phase.  Here are just some of the most critical lessons we learnt during the sessions:

  • Social care teams and information/records management teams rarely work together or communicate regularly. They inhabit very different worlds, culturally and practically. All of the guidance we produce has to speak to both sectors and encourage practitioners to work together. The less fragmented recordkeeping is the better.
  • Training in recordkeeping is needed at all levels. We’ve often talked about training for social workers or records managers, but the complexity of the system means we need a holistic approach. Everyone who works with children and young people or their records should have training.
  • The regulatory and inspection regimes provided by Ofsted and the Information Commissioner’s Office are very important but can have a negative impact on recordkeeping, creating risk averse and inflexible approaches. Children, young people and care leavers get squeezed out by processes that are designed to fit a standard rather than support the individual. Activism is needed to work with the regulators to establish child-centred, care-centred recordkeeping as best practice.
  • Thinking about records in terms of retention schedules, performance management and accountability doesn’t properly reflect their importance as memory and identity resources. If we shift our thinking about who records are for and why they are so vital then we can make small changes that support people. For example, we can write records in children’s own words rather than paraphrasing them, and we can extend the time we keep them beyond the minimum retention to the life time of the person they are about. Small actions like this, taken on a case-by-case basis, can make a huge difference.

Visual minutes from Manchester Workshop, by Rowan Watts.

Thanks to everyone who participated in the workshops. I’m looking forward to sharing the resources we create very soon. Watch out for the link to the short film when it’s released and do share it on social media.

*This funding was from the UKRI’s Higher Education Innovation Fund (HEIF), via UCL’s Innovation and Enterprise programme.

“Why was I in care?”

VictoriaHoyle4 June 2019

For the past four months I have been working on coding and analysing the interviews, workshops and focus groups we’ve conducted with nearly 100 care experienced people, social workers, records managers and others involved in child social care recordkeeping.  There is a huge amount of information to sift through and categorise, but the help of our analysis software NVivo I can now see clear themes and shared experiences emerging.  One thing that has struck me time and again is how often a care leaver says they wanted to access their records to find out why they were taken into care, or to better understand the circumstances around going into care.  Information governance practitioners have also told us this is the most common reason why someone makes a subject access request for their records.

Recent research in Northern Ireland suggests that the struggle to answer this fundamental question starts whilst someone is in care.  Linda McGill and colleagues have demonstrated the high numbers of children and young people who are confused about their personal circumstances and why they are in care (McGill et al, 2018).  McGill’s research suggests that social workers struggle to communicate a consistent and honest response to questions from children, who often hear different stories from different people at different times.  This uncertainty may be internalised as feelings of blame, shame or fear (Hughes, 2009). It can lead to the construction of damaging stories that make sense to the child but are far from reality.  For example, that they are to blame for being taken into care because they were naughty or because they failed to stop a bad thing from happening.  Our own research shows that these feelings and stories stay with people throughout their lives. Several of the adult care leavers who have contributed to the MIRRA project have spoken about it.  They wanted to access their records to find out why they were taken into care in order to dispel these lifelong feelings of guilt and fear.

“Why was I taken into care?” It sounds like a simple question, but it’s anything but.  Quite often the answer is complex and cumulative, and difficult to locate in an individual’s records.  As it often forms part of documents used in care proceedings it may be wrapped up in legalese, jargon and references to legislation.  Or alternatively, in some more recent digital records, it may be recorded using tick boxes that identify ‘factors’ in the social workers’ decision, lacking nuance and narrative.  At the point of access the information is also highly likely to be redacted because of the role that ‘third parties’ such as parents, siblings and other carers have played. As a result it can be one of the great unanswered questions of the access process.

When people do get an answer the positive emotional and psychological impact can be enormous.  Our co-researcher Gina has described how seeing her records finally helped her to realise that being in care wasn’t her fault:

“…right through up until I got my file I thought it was my fault, because I was a naughty child or whatever. It was only when I read through my file that it made me realise it actually wasn’t my fault and that helped me to move on. That was really important for me.”

Another of our interviewees described how his brother still blamed himself over twenty years later:

“…my brother… he built this idea up that we all went in to care because [of him]. That was the narrative that the whole family had got a grip on. But when I accessed my care files that was just the reason for the initial referral. When social services came in it was then another thing and another thing and another thing, there was sexual abuse and then we went in to care. He didn’t know any of that.”

I’m now writing guidance for practitioners about how to approach recordkeeping with love, from a human-centred perspective and plan to make two key recommendations around this critical issue. Firstly, we will be echoing McGill et al (2018) by highlighting the need to talk to children and young people sensitively and often about their life circumstances, so that they develop an organic understanding of what has happened and why. Secondly, that records about care decisions should be written as if they were being addressed to the child, so that they are clear and understandable. Thirdly, by urging those who handle requests for access to records from older care leavers to treat information about why they were taken into care as their information, even where it also touches on other people (‘third parties’).  As our co-researcher Isa puts it:

“…when somebody goes in to care nothing is third party. If it’s the reason why you went in to care, it’s not third party.”

Confronting the difficult reality of why someone is or was in care through these recordkeeping practices could make a real difference to how they see themselves and remember their childhood.

Recordkeeping with Love

VictoriaHoyle21 January 2019

Over the last year I’ve spoken to a lot of people about accessing their social care records, and about their experiences in care and as care experienced adults. I’m currently working back through the interview transcripts and focus group recordings, doing primary data analysis based on the coding framework we co-designed last year.  I’ve been struck by how often the conversations turned to solutions. Not just to recordkeeping problems but to the bigger issues of the lack of identity, belonging and mental wellbeing that so often motivate people to go looking for their records in the first place.  Revisiting these discussions has been powerful and illuminating, challenging me to think about what we, as a research team, can do to improve people’s lives.

The most common answer I’ve heard is ‘more love’.  People have often talked about how the absence of love, and of simple expressions of care like hugs and cuddles, left lifelong wounds for them.  Accessing records is often part of the process of healing, through understanding what happened to them and why.  But unfortunately records and the access process can reinforce rather than help the hurt. This is because records are so often the product of loveless or careless ‘care’: they are the tangible evidence of the way a child or young person has been turned into a task, a job and a statistic.  The process for accessing records can be similarly dehumanising. Long waiting times, lost files, heavy redactions, and poor (or non-existent) aftercare seem to underline the message that you’re not important.  Several people have shared common experiences of being told ‘oh we can’t find you, according to the system you don’t exist’. Others have been advised, at the point of accessing their records, that ‘there’s nothing very interesting in there’ or ‘I’ve seen much worse.’  This way of speaking and thinking about the records is felt as a commentary on the person themselves, even if that’s not what is consciously intended.  To hear that you don’t exist, or that the most important events of your childhood are uninteresting is very hurtful. Generally, it shows a lack of empathy in social care recordkeeping that begins at the point of creation and carries on right through to access in adulthood.

I have to admit that I’ve often wondered what MIRRA can do to make an appreciable positive difference. We think part of the answer is compassionate guidance and better training, and strong evidence to support fairer legislation, but how do we make the case?  Especially at a time of diminishing financial resources, huge social work case-loads and the highest number of children in care since the 1970s.  In thinking about this question I’ve been coming back again and again to love.

This morning I watched a TEDTalk by Scottish care leaver and residential care manager Laura Beveridge, about the need for a revolution of love and equality for children in care.  It’s a few years old now, but if you haven’t seen it, I urge you to watch it: youtu.be/E-wp7HN9Zvs .  In it she talks about what it’s like to live in a world where ‘you don’t call your parent mum or dad, you call them staff’, where you have to sign an official form to get your pocket money and where what you can do and where you can go depends on a risk assessment. She talks about leaving care with a box of administrative papers rather than a memory box of photographs and mementos.

This further convinced me of the fundamental importance of love in recordkeeping.  Social care records have a statutory and official role in Children’s Services, but surely they also have a critical function in capturing and demonstrating the love that we want all children and young people to feel.  If a commitment to social records created with and for love ran right through the recording function and on into the access process then ‘files’ could be better in lots of ways. Better at supporting and informing child-centred social work practice; better at capturing the key moments and memories of childhood; and better at helping to answer the lifelong needs of care-experienced adults.  Drawing on the work of psychologist Gerard Egan (2000) Michelle Caswell and Marika Cifor (2016) have challenged recordkeepers to bring ‘radical empathy’ to their work.  They define radical empathy as “a willingness to be affected, to be shaped by another’s experience, without blurring the lines between the self and the other.”  By rethinking the value of social care records as evidence of love, and coming to a better understanding of why records matter to everyone involved in making and preserving them, we might come to see them as tools for caring rather than for surveillance and judgement.  Increasingly I feel that bringing more love into recordkeeping has to be a key aim of our research outputs.

For the Record by John-george Nicholson

VictoriaHoyle17 September 2018

This post has been contributed by John-george Nicholson and was originally published on his blog, Own Two Feet, where he writes about his childhood in care. 

Recently I’ve started writing about my experience in care. I don’t know what all the words will become, but I’m enjoying doing it. As a kid I was never a big writer. I liked writing when I had to do it for school, but that was about it. But what got me putting pen to paper was getting my care file a few years ago.

Let me take a step back… one day I was sitting in a training session at work, one of those ones you have to go to that is normally a waste of time. It was on data protection (making sure you kept people’s addresses and dates of birth and stuff like that safe). I didn’t think it meant a lot to me, but in the session the trainer said everybody is entitled to see any data that anyone holds on them.

It got me thinking. I realised there must be loads of stuff held on me from when I was in care (social worker reports, carer reports, police reports, psychologist reports, school reports etc). I was living in Birmingham at the time, but phoned up Wandsworth Social Services and asked if I could have all the information they held on me. The woman didn’t have much of a clue what I was talking about, but said she would look into it. Time passed and I forgot about it.

About six months later a parcel arrived. I was late for work, quickly signed for it and stuffed it in my bag. That day it was pouring with rain. Typing now, it seems like yesterday. I remember I was still drunk from celebrating a promotion the day before. In the rush I put on the clothes I was wearing the day before. Great way to start the new job. Anyway, I ran for my bus, got it, sat upstairs at the front and remembered this random package in my bag. I opened it up and inside was a red folder. I was confused and wondered if it was for me. I began reading.

It was my life in care written by other people. It started with a chronology of all the places I had been and then there were pages and pages of different reports. I wasn’t ready for it. I put my hood up and sat on that bus for an hour and cried my eyes out. I read the whole thing and cried all the way to work.

When you live in care you block a lot of stuff out. Any of you reading this in care will know what I mean. There’s so much stuff to deal with that some things you just have to block out. It doesn’t stop it happening, but you make a place for it and you stuff all that shit in there (you don’t have to be in care to have that place, we’ve all got it, but some are just bigger than others). I’ve still got that place, but more and more as I get older I find myself visiting that place and remembering, trying to work stuff out. Some stuff I never will, but I think when you’re ready it’s good to go back and look at things with fresh eyes.

So back to the file. I got off the bus, dried my eyes and went to work. I hid the file away and didn’t look at it for a long time. One of the things that hurt was that in all the words that the file possessed, mine were missing. There was hardly anything from me. I don’t know, have times changed now? Do young people fill out their own reports to add to all the other people’s reports? Someone out there please tell me? Do young people get the chance to have their say and to write that say down on paper?

Words said out loud often get lost in time, but words on the page stick. These words in my file have certainly stuck with me and are still a big influence on me. But as I’ve got older I’m starting to find my own way around them and around my time in care.

I’m starting to build my own history. I’m more than the file. I’m more than someone that was in care. I once let being in care define me, but now I’m much more than that.

But the file is still important to me. It’s like an anchor to my childhood. It’s like a map of where I’ve been. So I started this blog saying I wasn’t sure where I was going and here we are and I think I’ve already written too much. I just want to finish by saying to anyone who is in care that you have the right to see all the stuff people write about you. That’s your right. But be careful if you ever want to see your file. I wasn’t ready when I got mine. I didn’t get any warning and to be honest it messed me up for a bit. But now I’m so glad I did get it and still have it. Now I see it as a gift. It’s not an easy read, but as much as there is a lot of pain in there, there is also a lot of joy. I’ve been given memories that would have been lost.

Now I’m not saying that I agree with everything in the file, some of it is outright lies. You know how social workers and foster carers can be. They don’t always get it and their version of things is sometimes not how it was, but nobody’s perfect. I know my version of some things is definitely not perfect. It’s funny looking back now at the file because sometimes the people writing the reports so didn’t get it, so I would advise maybe keeping your own file, writing down your own thoughts (of course just for yourself, you don’t have to share them with anybody) so that when you get your file one day like I did you can have something to compare it to.

Speaking at the Archives and Records Association Conference

VictoriaHoyle10 September 2018

On the 30th August Darren, Gina, Andrew and I (Victoria) attended the annual Archives and Records Association conference in Glasgow to talk about MIRRA and about the value of social care records for memory and identity.  The 30 minute session was attended by over 30 archivists, records managers and conservators from the UK, Australia and the USA.  We chose not to do a traditional conference paper but instead combined personal testimonies with interactive exercises to get people thinking and talking about the issues.  We wanted our audience to think about two key questions:

  • How and why are records like care records valuable for memory and identity?
  • How can we improve the way archivists and records managers look after and provide access to them for these purposes?

We left these questions purposefully open because although some people in the room worked with care records others didn’t. While we were talking specifically about care leavers’ experiences we wanted to show how the same lessons could be applied to working with any personal sensitive information, such as health or education records.

After a brief introduction to the project we asked the audience to take part in a quick-fire exercise to get them thinking about what it means to rely on organisational records to tell your life story.  They used pink post-it notes to note down records from childhood that they or their family members had, and yellow post-it notes to write down records about them held by organisations.  We then asked them to imagine reconstructing a narrative of events only from the yellow post-it notes as many care leavers must do.

Darren and Gina then spoke about their personal experiences of accessing care files and the positive and negative impacts that it had on them.  Both touched on some of the structural and practical difficulties of the access process, including navigating bureaucracy and redaction, as well as the emotional and personal challenges.  Darren talked about his work with The Care Leavers’ Association supporting other care leavers to access their records, including people currently in prison.  Afterwards many people said how important and powerful it had been to hear directly from care leavers and to see about how recordkeeping decisions had affected their lives. It put everyday processes and procedures into a new perspective.

This helped to feed into the next exercises where we asked the audience to:

1) Share what they saw to be the challenges to providing access to personal records

2) Suggest changes that could be made to improve services to care leavers and others.

Many familiar themes emerged during the discussion: the limits of Data Protection legislation, making decisions about redacting third party information, finding and identifying the right records, lack of training in how best to support the process and the emotional impact on the archivist and records manager.  It was heartening to see the number of changes people thought could be made though, from the ambitious (changing the legislation) to the actionable (development of training).  The key message that emerged was the importance of putting the care leaver first in the process – a response that seemed directly connected to having heard the personal stories earlier in the session.  Almost half of the attendees said that they would change something in their work as a result of being at the workshop, which is a great result.

Afterwards Darren, Gina and I met up with Nicola Laurent and Michaela Hart from Australia to talk about the work they have done there with the Find and Connect web resource. It was an opportunity to share the learning that they’ve done over the last ten years in supporting care leavers, former child migrants and the Stolen Generations of aboriginal children to find and access their records.  We hope that in the long term we can move towards a similar level of recognition and investment in supporting care leavers’ memory and identity.

Academic Researchers and Social Care Records

VictoriaHoyle13 August 2018

The MIRRA project is mainly focused on the information rights of care leavers, and on the information responsibilities of the people who create and look after care records. However, we are also interested in issues affecting another group of people who regularly seek access to care records: academic researchers who use them in their work.  This work might be in the social sciences, sociology and social work, in economics or in history.  It may involve access to large anonymised datasets, to look at trends and patterns in social services, or analysis of the records of individuals (such as case files) to better understand events or practices in context.  Recent examples of research using records like this includes Michael Lambert’s work on ‘problem families’ in the North West of England between 1943 and 1974, which drew on 1800 case histories, and Malkiat Thiarai’s research on using statistical analysis of anonymous data to support service planning in Birmingham.  Several large scale projects are now underway to make large quantities of social care data available for this kind of research use, such as the Nuffield Family Justice Observatory.

But providing researchers with access to records raises many ethical, moral and practical questions.  What rights should researchers have, and what processes should be in place to ensure they access and use the information sensitively?  Should the subjects of records – children, young people and care leavers – have a say in how their data is being used? How can records be created and managed in ways that support research without contravening people’s right to private and family life?

At the moment researcher access to care records is covered by the same legislation as access for care leavers themselves: GDPR and the new Data Protection Act 2018.  Section 19 of the Act allows for the “processing” of data for “archiving, research and statistical purposes”, so long as:

  1. Researchers acts in ways that protect the personal data, such as anonymising information or working under strict access controls.
  2. There is no likelihood that using the data would cause “substantial damage or distress” to the subjects of the data, e.g. care leavers, their families and carers.
  3. No decisions will be made about individuals based on the research, i.e. about their care.
  4. The research can’t be done in any other way without weakening it.

The research also needs to have a “lawful basis for processing”, which is usually that “it is necessary for scientific or historical research in the public interest”.  If a researcher can convince whoever holds the records that all of these conditions are met then they could legally be given access to significant amounts of information.

Most researchers will also need to convince their University’s Ethics Committee that their work is ethical, a test that is often much stricter than the Data Protection Act.  For example, they will need to consider whether it is possible to gain consent from the people the records are about, and justify why if not. They will also need to think about the implications for harm, and how they will protect against it, and provide evidence of the security measures they’re going to put in place. Many universities also require researchers to register with their Data Protection Officer.  Meeting all of these criteria can be challenging and time-consuming but neither the legislation or the ethics process is designed with social care records in mind, and may not take into account some of the unique qualities and sensitivities of care records.

Once researchers have permission to proceed they may find that the organisations and institutions that hold care records – such as local authorities, charities and archives – have very different procedures and standards of access.  We know from our research already that some refuse completely, while others are relatively open. Some don’t have a good enough understanding or management of their paper records to provide access, and many are using digital systems that make it difficult to export and use more recent data.  Although a project might be of public interest or benefit, with stretched budgets it can be difficult to justify the time and expense of working with a researcher. In some cases giving access to records is seen as too great a risk.  All of this may limit the potential for learning from records.

We’re interested in understanding more about all of these issues from the researcher’s perspective, so that we can put them in the context of the views of care leavers.  How do care leavers feel about their files being used for research? It may be a very upsetting prospect to think about a researcher reading your file, often unredacted, when you haven’t been allowed to see all of it yourself.  At the same time it might be positive to think that your experiences are contributing towards improving care in the present, or a better understanding of the care system in the past.  We hope to come up with some best practice guidance to help researchers and the people who manage the records navigate the moral and ethical questions better and more consistently.  Early next year we will be holding a workshop with researchers to talk about and learn from their experiences, which we will integrate into the project outputs designed with our care experienced research team in 2019. If you are interested in taking part, please get in touch.

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

VictoriaHoyle23 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!