Memory - Identity - Rights in Records - Access: Embedding Participatory Recordkeeping in Child Social Care

Lead Research Organisation: University College London
Department Name: Information Studies

Abstract

'Memory - Identity - Rights in Records - Access: Embedding Participatory Recordkeeping in Child Social Care' follows directly from our earlier research grant 'Navigating the Public Information Rights Ecology'. The latter explored information rights in the context of child social care in England, particularly from the perspective of care-experienced people who sought access to records about their childhoods later in life. Co-produced with our third sector partners, The Care Leavers' Association, the research collected data through interviews, focus groups and workshops with diverse stakeholders. This data evidenced strong support for a fundamental shift towards participatory recordkeeping approaches in child social care settings. At present recording and recordkeeping systems are oriented towards the needs of service providers, with a focus on risk management, mandatory reporting to central government and the needs of social workers. As a result the voices and feelings of looked after children, carers and families are often missing or obscured. Systems are also proprietary, procured from commercial providers, and are rarely interoperable with the software from competing vendors used in adjacent services (such as health, education or youth justice), making the information they contain difficult to share. They can only be accessed by a limited number of individuals, exacerbating a work culture which sees the record as internal, administrative and bureaucratic. On the contrary our research demonstrated that records are a vital resource for other stakeholders, most especially the care experienced person themselves, in understanding the circumstances of someone's life. Children in care and care leavers have a deep personal and emotional need for records to help construct life narratives and a sense of self. Transparency and equity in recordkeeping therefore has significant potential to increase their wellbeing and sense of belonging. Using participatory recordkeeping systems would enable the child in care to be more actively involved in the creation and management of the records that document their lives. This would help to alleviate the disconnection, isolation and disempowerment they face. Their voices would be captured and their experiences and feelings centralised. At the same time participatory recordkeeping processes would represent a proper response to recent government agendas that advocate for child-centred practices in social care settings. They would balance the access needs of different record stakeholders whilst also meeting key legislative requirements (such as the Data Protection Act 2018). Issues of privacy, confidentiality, accuracy and conflict could be addressed in transparent and efficient ways.
However, implementation of participatory practices is currently hindered by the lack of appropriate enabling software on the market. During this follow-on project we will engage with OLM, a major vendor in the social care systems market, to use the findings and outputs of our original research as the basis for the development of the specification required to support the development of a commercially available participatory system. By bringing together the UCL team with product designers and user experience experts from OLM, we will be able to test the concept of a system that aligns with our recommendations, and that can embed our framework for participatory, equitable and just social care recording into the digital tools used in children's social care settings. Subsequently, we will present and disseminate the resulting specification, alongside the findings of our original research, in two high profile launch events for children's service providers in England, Wales and Scotland, reaching up to 150 organisations. In this way the project will make an important contribution to the debates about social care recordkeeping in the UK, leveraging long term change.

Planned Impact

Our project will deliver impact in two key ways. Firstly, by developing an open-source specification for a participatory recordkeeping system for use in child social care settings, it will underpin the infrastructure needed to deliver collaborative, equitable social work recordkeeping in the UK. Systems developed as a result will enable multiple stakeholders to participate in the production of children's records, including the children themselves, creating a valuable resource for memory and identity throughout life. Secondly, by engaging with children's service providers, both through the user testing of the specification and two launch events, our project will disseminate the findings of our original research to broad new audiences across England, Wales and Scotland. These audiences will, in turn, become potential customers for participatory recordkeeping systems, driving the development of commercial software based on the new specification.
To enable this impact the system specification will be published under an open source Creative Commons licence on UCLB's online licensing platform (https://xip.uclb.com/), as an open resource for software vendors and children's service providers. It will be free to download and we will be able to track its use. Our launch events, social media and blog will encourage service providers to include the specification in tenders to procure new recordkeeping systems. The project will equip OLM and their competitors with the framework for developing products to meet this demand, encouraging a participatory turn in the market. OLM have been specifically selected for this partnership because of their existing commitment to participatory approaches. Working with them will enable the specification to be swiftly implemented through updates to their child social care system, ECLIPSE. OLM's current market share of 40% of English and Welsh service providers and 70% of Scottish providers will ensure significant early up-take.
Two day-long events in Birmingham and Edinburgh will attract representatives from up to 150 children's sector organisations. The findings of our original research and the specification will be disseminated to audiences in England, Scotland and Wales. This will lead to discussion of how our research could support and inform equitable recordkeeping in contexts outside of the scope of the original project, which was limited to England. The target audiences for these events will be decision-makers from national and local government bodies, social care providers, social care system vendors, voluntary organisations, national inquiries, advocacy groups and charities. The strong network of contacts built up through the original research will ensure the events are well attended. Each event will also provide an opportunity to gather feedback on the participatory recordkeeping system specification prior to publication, further refining the development of software based upon it. The specification has the potential, in the longer term, to become a national benchmark for best practice in child social care recordkeeping and a means of aligning child-centred rhetoric with reality in the policy arena.
The main beneficiaries of our project are children currently within the care system, whose lives will be enhanced through greater participation in, and a degree of control over, their records. This has further benefits later in life when, as adults, they will not experience the same lack of knowledge and confusion as care leavers within the current system. Social workers will also benefit by being able to work more collaboratively with clients, making and documenting decisions and completing assessments and reports together. Information practitioners working in children's social care settings will also be impacted, meeting key legislative requirements (such as subject access requests under GDPR and the Data Protection Act 2018) within a more transparent and efficient digital infrastructure.
 
Description We developed some findings which were embedded into the recordkeeping diary app.
Care leaver workshop:
The choice of which Principles to choose as being of most importance centred around three main themes:
• The stress of accessing records
• The importance of tangible records
• The redaction of records

The stress of accessing records: Accessing care records can be upsetting and stressful for several reasons. First, they may contain predominantly negative information; second, much material may be redacted; third (by contrast) they may contain hitherto unknown and possibly damaging and upsetting information, and finally, the voice of the young person in care (the 'subject' of the record) may be marginalised or mis-represented. The emphasis in the workshop was on the impact that access might have and on the support required to mitigate this: 'Young people don't realise the impact accessing records can have when it brings up things you don't know'; 'if you have someone who is delicate or struggling, these files can make or break someone'. For this reason, the role of the social worker was highlighted: 'it takes a very special social worker to prepare a child to read their record. It's a very skilful process'.

The importance of tangible records: This topic goes to the heart of the whole recordkeeping process - raising questions about the nature and purpose of the records, how they are compiled and by whom. One workshop attendee observed that, 'tangible things are so important for memory re-awakenings', and for 'a coherent sense of self'. Clearly, this function goes far beyond any administrative or bureaucratic professional requirement. One attendee revealed that he had: 'loads of stuff in my loft'. Again, the emphasis was on the evocation of memory: 'emotional memories create an explosion of feelings. They transport you in time - pictures of things, people [are] about reawakening memories'. Emphasising the importance of physical objects, one person observed that 'the smell of letters and hand-written notes in old books bring back more memories than digital copies'. Considering all this, 'corporate parents should be safeguarding the memories of children'. As experience in accessing files has shown, this does not necessarily occur. In addition, 'photos should be copied so if they get lost [care leavers] can access them still'.

The redaction of records: Considering the need for records to provide memories which (as elicited in phase one of the research) 'renew [care leavers'] sense of identity' (Hoyle et al, 2020: p8) it is not surprising that the issue of the redaction of content arose, and that considerable disenchantment with the practice expressed. One attendee mentioned a family tree being redacted, with the removal of her mother's name ('What is the point of giving me a family tree and redacting the names?'). In another case, the name of the invitee of a birthday party invitation removed. As noted, these are actions that would never occur in a normal family. In addition, redaction leads to losing records' effectiveness as memory aids (how easy is it to have memories of a party that occurred in one's childhood, with the name of the host not even visible on the invitation?).

Although, in the above cases names were removed for the purposes of data protection and confidentiality, there was a feeling that a main driver in the redaction process was to protect the institutions. 'I was in a horrible foster home, but everything they gave me [about it] was redacted. They prevented me accessing anything I could use against them'. Another attendee, who had worked in social care, said that Local Authorities protecting themselves would 'always be an issue'.

Finally, on this point, the sheer scale and amount of redacted material was cause for concern. Knowing 'lots of' other care leavers whose records had been redacted was mentioned, with the extent of individual redactions so great it caused one person to declare: 'My record was so heavily redacted it might just have been a blank piece of paper.'

Other issues: Other aspects of the issues related to the nature of records were highlighted, including the importance of 'multiple voices' present, and the organisation of records as presented to requesters. With regard to the former, the contrast was again made between the individual in a care situation and that of a biological family: 'As a family you hear multiple voices but in care you don't get that variety'. Equally, 'your own multiple voices [are important]. One day I would hate my foster parents, then another they would mean a lot to me'. Finally, regarding the organisation of records, the presentation of the care file, such as putting notes in chronological order, was of considerable importance. One attendee said that this 'made a massive difference to me. I had a fantastic social worker who made sure it was in chronological order'. Another attendee said that having his file thus organised was 'helpful'.

Professional workshop:
For this group, discussion also revolved around three major topics, although in this case, these were:
• Retention of and (care leaver) access to records
• Redaction of records
• Record creation and content

Retention and Access: It was well-recognised that the creation, content and retention of records centred around 'deeply respecting someone's life'. However, one participant pointed out that '[in-care] young people don't think [records] are important'. It was, therefore, incumbent upon those working with the cohort to emphasise 'that they are important and we show that by taking care of your things'.

Access was discussed both with regard to that which may occur while the child was in care and also later in life, as care leavers. Regarding the first of these situations, 'if children are having access to their records at eight [years old] then they need to be adequately supported'. Participants felt that it would not be appropriate to allow full access (not mentioned, but implicitly to protect confidentiality of others, and to shield the child from negative content). Regarding the latter, one Local Authority has 'trauma-informed practice across the board, so the files have to be looked on with a lens of what is the kindest thing for these children'. Considering this, 'maybe it is about access to different parts of the record for different people, so the fuller version of the file is opened when they are older'. One participant suggested the age of 16 'because it's people knowing they can [access their files]'.

There were also practical considerations in terms of retention and access: 'good recordkeeping is vital. creating a system where all records are accessible in one place will make retrieval easier.' In this regard, one issue was how different media could be integrated or linked with records. Another issue with such non-textual content was storage: 'even something like short films, storing anything like that is a real challenge - creating that storage space'. Not only that, but 'you are not just working with the children now or until they are 21, but with them over a life-time'.

Creation of records: There was considerable support for a participatory recordkeeping system (even if not explicitly named as such) and cognisance of how sensitive record creation would alleviate or obviate the discomfort and disenchantment experienced by care leavers who were not engaged with the creation of records about them. However, more comments were made around the documentation of the professionals themselves: 'Our assessment should be written in a child friendly child centred way', and, 'we should be able to write the records in a way that they can have age-appropriate access'. One stated 'recording policy' was 'to make sure that [social/care workers] understand that people will be accessing the records', and to therefore ensure they are sensitive to this when they write them.

Related to this was the failure of records to be 'more fully representative of what is happening. I think that since the authority is acting in loco parentis they are very lopsided [towards the view of] the authorities'. This view tended to be negative, as care workers are obliged to record 'incidents'. Examples were 'when you absconded or stole something', which creative a negative impression in the record. It would be better, it was felt, 'If some of the time is used to gather information that is less adversarial, like what was it like when you first came out of hospital?'.

Another aspect of record creation was the variety of content not just in terms of information and multi-perspectives, but of going beyond the written record to include 'photos and other important things [which] make a big difference to that [in care] person'. This means the record 'is more meaningful, more human'. The use of such material as memory aids (and, implicitly, as means of self-identity) was mentioned: 'If any one of us saw a photo we would think oh yes, I remember that place'.

Redaction of records: Comments on this topic showed that there was general, if tacit, agreement that a certain amount of redaction was necessary - notwithstanding one comment that, 'I ... heard that if young people request their court records they also have access to all [care record] information through the courts so the fact that it is all redacted is a nonsense'. 'You have extremes of redaction', where the practice occurs to an enormous extent, 'even the names of siblings - it's ridiculous'.

Regarding redaction practice, 'it is important that the redaction is coherent so it is not left like a total mystery'. In fact, the practice was described as 'really problematic' in that, 'so much key information is removed under the umbrella of redaction'. One person said that 'files come back with pretty much everything out and I think that is unacceptable. It should only be a third party [about whom information is redacted]', although even this was 'problematic in some ways'.

There was also an element of justification around the issue of redaction. This related to available information being problematic, and the legal aspects of redaction and respect for privacy rights. Regarding the first of these, 'tensions in families' could be 'worsened by non-redacted information'. With regard to legal and privacy aspects, although children in care think of their peers as 'family' that is not the case, and so to protect privacy 'because it's not one person's information', 'you have to redact otherwise you are breaking the law'. This creates a situation in which 'there is a real tension in how much we can share'. On the other hand, there was agreement that the redaction of photographs was not good practice: 'that wouldn't happen in usual family life, so I don't know why we are making decisions about that'.
Finally on the issue of redaction was that of prior knowledge. One participant explained that 'when you redact one of your objectives is to find out what they already know'. However, he disliked that approach, saying 'you should assume that the person knows nothing - you are skewing your judgment'. Another affirmed that they would 'never redact something they already know'.

Record content: In terms of the content of records, opinions were very similar to those of the care leaver group. This comment encapsulated the attitude: 'If we include the young people in all stages of creating the file about them, there won't be the shock of what they are actually receiving as they will have been part of the process'. Similarly, 'we need to keep in mind the child, and that as care leavers they may want their record, and so having them as part of the creation would be needed to make it more meaningful'. In addition to the child, another said that 'what was really important for me is multiple voices, so what is important is the perspective of other family members'. This was also important because recordkeeping is 'subjective', so that 'you are always reading things from someone else's perspective'. It was therefore important that not only the 'authoritative' social worker perspective is reflected in the record. Finally, the importance of physical objects was also highlighted - as in the care leaver workshop. Thus: 'where we can share the original we [do] just the paper, the smell, the feel of it takes you back. That makes a big difference, so where we can - in older cases - we provide the original'.
Exploitation Route the diary app specification has been published:
Shepherd, Elizabeth, Sexton, Anna, Lomas, Elizabeth, Williams, Peter, Denton, Mark, & Marchant, Tanya. (2021). MIRRA app SRS: Memory - Identity - Rights in Records - Access Research Project: a participatory recordkeeping application Software Requirements Specification (SRS). Zenodo. https://doi.org/10.5281/zenodo.5599430
this is open source and is being developed by a group of computer science students at UCL into a prototype app
Sectors Communities and Social Services/Policy,Digital/Communication/Information Technologies (including Software),Education,Healthcare,Government, Democracy and Justice
URL https://doi.org/10.5281/zenodo.5599430
 
Description For the MIRRA app, the technical details are detailed first, followed by an account of the interface and the features. The former is of most relevance to app developers, and the latter to potential users. As an introduction, the purpose of the app is to create a safe, simple way for a young person in care to record a digital personalised diary, parts of which could be shared with their social worker/ carers. Another key objective is to give the young person control, and this is done through the app via the personalisation features where customisation can be applied. Lastly, the app uses gamification for engagement as a method to nurture and help the young person in getting the most from it. The MIRRA App: technical details The application as designed has two components (the client app and server) and an optional third component (integration to case management). This document provides suggestions on how each component could be built in such a way that it would allow then to be developed and deployed. Server Component The server component will handle the storage of the data recorded by young people alongside security information such as usernames and passwords, etc. This would be run in an appropriate cloud environment, and it is suggested that use of a public cloud service such as Microsoft Azure, Google Cloud or Amazon Web Services is sufficient. The server software must be designed with the 14 Cloud Security Principles in mind, as recommended by the National Cyber Security Centre (NCSC, n.d.) and this will determine some of the design decisions. For example, following the principles it would be recommended that each fostering agency or local authority have their own instance of the app to provide data segregation and help with loss prevention. The principles would also say that data exchange between the client app and the server is protected using TLS 2.1 encryption to prevent eaves-dropping. The server will need to present a number of application end points and an application programming interface (API) to the client application. It is recommended that this is provided in GraphQL which is an API technology that allows simple update whilst limiting changes to the server breaking the client application. GraphQL interfaces provide several tools to help client application developers build and test their application. This would allow for the possibility of building different versions of the client app against a single server. The server software can be developed in any of the common technologies for this purpose such as Java, C#, C++, Ruby on Rails, PHP, JavaScript / Node, etc. The exact choice is up to the developer based on their skills and abilities but all would be suitable. It is recommended that as many of the cloud based services provided are used such as database as a service as this will reduce the amount of development needed. Client Application The client application is the part the young person has on their device and uses. Within client applications there are two choices: native apps and installable progressive web apps. There is no clear way of choosing between them although there are a lot of opinions. Native apps are developed specifically for each device operating system either Apple iOS or Android. Android has many variants, and a native app will need to take account of these because they impact the look and feel of the application on different devices from different manufacturers. For Apple iOS applications Apple provide Swift which provides an easy-to-use development environment. For Android there is Kotlin provided by Google. However, for both operating systems other options are available and can be considered. Cross platform tools, capable of developing apps for both operating systems are also available. Once developed the app will need to be certified and delivered by an appropriate app store. The exact choice will depend upon the developer based on their skills and abilities. Progressive web apps are developed once for all devices and work within the browser on the device. They can be installed if the user chooses to do so and then work just like any other app. There are many tools for building progressive web apps including low code tools in addition to common web development technologies such a JavaScript, React and Angular. For this application the use of progressive web apps may be preferable. It will allow the app to work on a range of devices, including laptops, without having to develop multiple versions for each device and potentially a web-based version. With this approach also, companies no longer need to build, maintain, and update separate versions for iOS and Android operating systems. The overall cost of a PWA solution, in comparison to a native app, is lower. This also avoids having to get the application certified for the app store. Whenever a native app is ready, however, it should be added to app stores such as Apple's and Google's. Integration opportunities between the app and current Case Management Systems (CMS) would also need further research and investigation, but the most viable option would through an Application Programming Interface (API) (a connection between computers or between computer programs). What would be updated from the app into the CMS and the level of moderation and governance of those entries would need to be decided. The preservation of the app entries within the CMS would be another area that would require significant understanding and action. Integration Component The integration component will be needed to integrate to other systems such as case management to share information. Integration could be provided by the same, or similar, API layer used between the server and the application. GraphQL could be used to expose several APIs that would allow a case management system to query the data and re-use it in its own datastore. Access by the case management system must be secure and authenticated and we would again recommend following the Cloud Security Principles. Any provider should be Cyber Essentials Plus certified to show that their operation of the app meets a high standard of resistance to cyber-attacks. Facilities must be provided to meet the needs of GDPR such as the rights of access and erasure.
First Year Of Impact 2021
Sector Communities and Social Services/Policy
Impact Types Societal,Economic,Policy & public services
 
Description Research Partnership with The Care Leavers' Association 
Organisation The Care Leavers' Association
Country United Kingdom 
Sector Charity/Non Profit 
PI Contribution The research team has worked with The Care Leavers' Association to understand how our research can support their aims and objectives, specifically relating to access to records for adult care leavers. We have attended events of their advocacy campaign, the Access to Care Records Campaign Group (ACRCG) at the House of Lords, and provided them with access to our findings to support the development of their agenda for legislative change.
Collaborator Contribution The CLA has contributed the time of one of their project managers who participates in both the participatory research group and the project's advisory group. This project manager has helped us to recruit care experienced participants for our work and has also attended a number of conferences to contribute to the dissemination of the research.
Impact Conference workshop, Archives and Records Conference (Glasgow, August 2018) - 'I'm not a historical case, I'm still breathing': Access to records for memory and identity Conference workshop, Discovering Collections, Discovering Communities Conference (Birmingham, November 2018) - The MIRRA Project: Supporting care leavers' memories and identities through access to archives
Start Year 2016
 
Description partnership with family charity, Family Action 
Organisation Family Action
Country United Kingdom 
Sector Charity/Non Profit 
PI Contribution MIRRA's Principles for Caring Recordkeeping shaped the design and provided the content for a new web resource, FamilyConnect, created in 2020 by Family Action, a charity that provides practical, emotional and financial support to disadvantaged families across the UK. MIRRA's care experienced co-researchers reviewed the content, design, and look and feel, making significant changes to the language and visuals proposed. FamilyConnect provides support and expert guidance for the 4000 care leavers who seek access to their care files annually and was viewed by 2,264 users; 12,317 page views by December 2020. Julia Feast, an adoption specialist, called the website 'a unique source of help and advice for these people. It's a much needed resource which will continue to grow and aid this community'. FamilyConnect won the 2020 UCL Public Engagement Community prize.
Collaborator Contribution Family Action undertook all the design, presentation, content upload, user testing, and continued updating and maintenance and development of the web resource.
Impact Website as above
Start Year 2018