Children and families’ voices about their personal information and administrative data: Notes from a Nuffield Foundation hosted Roundtable, 8 November 2023
Liam Berriman and Elaine Sharland
What does ‘good practice’ look like in consulting children and parents or carers on how their personal information is governed and used by public agencies and organisations intended to meet their needs? What role can such consultations play in developing effective and ethical practices in the use of these ‘administrative data’? These questions were the focus of a roundtable event hosted by the Nuffield Foundation in November 2023. The event brought together policy, research and practice stakeholders with an interest in improving consultation with children and families on the governance and use of children’s personal information in public services. Building on the work of the Nuffield funded ‘Children’s Information’ project, and in context of the Children’s Social Care Review’s call for ‘frictionless sharing of information’ between agencies, the roundtable provided an important moment to take stock of what progress has already been made in enabling children and families to have a voice in shaping administrative data practices, and to identify the key challenges and opportunities for future work.
The event opened with presentations from leaders of three research projects that have undertaken work with children, care leavers and parents/carers to explore their understandings and experiences of the personal information and administrative data held by local authorities.
Presentation 1: Children, Young People and their Data
David Mackay from Children in Scotland opened, reporting on the key findings of the Children, Young People and their Data pilot project with children in Scotland, commissioned by the Scottish Centre for Administrative Data Research. David and colleagues set out to explore young people’s understandings of what administrative data are and how they are used. They found that children are both interested in how administrative data are used and support their use for ‘public good’. But young people felt that connecting this information in a meaningful way to their lives and experiences takes effort and willingness to work in a child-centred way. A key message was that children are keen to be seen as the humans behind administrative data.
Presentation 2: Parental Social Licence for Data Linkage for Service Intervention
Following this, Professor Ros Edwards from the University of Southampton turned attention towards parents, sharing key messages from her ESRC funded study ‘Parental Social Licence for Data Linkage for Service Intervention’. Based on a survey conducted by the National Centre for Social Research (NatCen) and on qualitative interviews, Ros and colleagues found that parents and carers often expressed concerns about how their families’ personal information is used. She explained that parents and carers expressed the desire for more accountability and transparency in the use of personal information held by local authorities, and that parents from marginalised groups in particular felt disproportionately impacted by data-led, rather than person-centred, decision making.
Presentation 3: Memory, Identity, Rights and Records project
Prof Elizabeth Shepherd from University College London extended discussion further by sharing findings from the Memory, Identity, Rights and Records project, which works with care leavers to explore their views about, access and contributions to the creation and content of their social care case files. Elizabeth described how these records, held by public bodies, hold important value for care leavers – as often highly personal accounts of their lives. But at the same time, they have little control over, and may have limited access to, these records. Elizabeth spoke about the challenges of local authority risk aversion affecting how their personal records are made available to care leavers.
Key points raised
- Children’s and families’ personal data and information are about themselves and their relationships with others
Responding to all three presentations, Professor Janet Boddy from the University of Sussex, and Ellen Broome from CoramBAAF, drew out some of the key questions and themes that were raised. Janet highlighted in particular how children’s and families’ personal data and information are not just about individuals but also interdependencies. As information can often be about relationships within families, she argued that it can be difficult to identify to whom personal information may belong or whom it may impact upon. Janet also advocated for more opportunities for children and families to be involved in ‘informed and respectful’ ways, to make sure that data practices and information use are accountable. Ellen echoed these points but focused especially on the relationships between practitioners and service users in the use of personal information. She asked how practitioners can best be supported to do information practices well – and how parents and carers be supported to hold systems to account.
- Challenges of gathering, understanding and sharing children and families’ personal information
These thought-provoking contributions set the stage for wider, open discussion among participants, about the challenges of consulting children and families about their personal information. Themes of trust and accountability continued to feature prominently, and with these the challenge of developing genuine and authentic involvement of children and families in information practices. Questions were asked about how consultation might be prone to, or hampered by, limitations - both in terms of who might be excluded from them and how far children and families’ voices might be acted upon. Achieving truly informed involvement was also seen as a challenge, particularly finding mechanisms for gaining informed participant consent not just at individual level but at scale. The discussion also drew attention to some of the specific challenges that have arisen from how personal and administrative information practices have evolved in recent decades. They include question marks over what data sharing opportunities and imperatives will mean for the future of local authority information practices, and conflicting or unclear priorities – between local authority audit and person-centred record keeping – about the purpose and most important beneficiaries of information use. This led to wider acknowledgement among participants that ‘personal information’ is not a single or homogenous entity; it needs to be recognised and treated as an umbrella term that includes information held at individual and collective levels, and in anonymised and non-anonymised forms. Finally, questions were raised about what’s meant by the ‘public good’ in relation to children and families’ personal information?
- Children’s Information Project’s role
Participants at the meeting were keen to extend the conversation further. Reflecting after the event, members of the Children’s Information Project identified that key among the themes to pursue will be: accountability, transparency and trust; informed involvement and consent in information practices; tensions between audit culture and person centred-record approaches; and, when it comes to using children and families’ personal information, what do we mean by 'public good' and who gets to decide?
With the encouragement of the Nuffield Foundation, the Children’s Information Project team will make sure the conversation continues. This seems a timely opportunity not to be missed to bring together researchers, policy makers and practitioners who share a common interest in amplifying children and families’ voices in how their personal information is used to improve their lives.
