Navigating the public information rights ecology: a recordkeeping perspective on supporting information rights

Records and archives, as touchstones of memory, give organisations, communities, families and individuals access to their shared history and values. In family settings, written records and photographs document significant events (births, marriages, deaths), celebratory occasions (birthdays, holidays, anniversaries) and milestones (first day at school, passing an examination, getting a job). Family and personal records are increasingly created and held in digital forms: methods are emerging to assist personal digital recordkeeping. The proposed research will consider how we can better understand the information rights ecology in the public and voluntary sectors in order to support individuals and public authorities in navigating it, for both the public good and for individual information rights. Our data collection will gather qualitative data from data subjects; welfare professionals; information professionals; and users of research data in order to understand all four perspectives on the research questions.

Many records about the life of individuals are created and held outside the family unit by organisations and agencies with whom the individual interacts. In the health and social care field this includes local authorities (eg day centres, childcare, education), NHS hospital trusts and GPs (health care), charities and third sector bodies (eg mental health care, social care), national policy and data bodies such as NHS England and Health and Social Care Information Centre (HSCIC) and other agencies. In such a mixed economy of service delivery it is often unclear who is responsible for documenting the services individuals receive, recordkeeping systems are generally incompatible with those of other organisations, and no shared recordkeeping protocols exist. Attempts to share data between agencies for the public good (such as 'care.data' which proposed to link hospital episode data and GP data) have failed to build a social contract of trust about access to data sharing and information rights, privacy and the nature of consent and opt-out. Poor recordkeeping has had a negative impact on the running of public services and on the ability of inquiries into historic abuses to investigate fully (such as The Independent Inquiry into Child Sexual Abuse (IICSA). This research will achieve better understanding of the landscape and enable sharing of good practice and improved recordkeeping in future for citizens, professionals and researchers.

The impact of poor recordkeeping on individual lives comes sharply into focus in the specific case of children in care and those who leave care, who usually lack a family setting and family memories. A 2016 report on Care Leavers and Access to Social Care Files warns that care leavers seeking access to their own files face an information rights 'lottery'. Care leavers often have no family memories or records and yet the institutional records created about their lives frequently neglect the individual's needs, treating them as 'data subjects' and refusing to provide information about 'third parties' such as siblings or parents. As part of this research project we will co-create a recordkeeping protocol with the Care Leavers' Association in order to assist the implementation of the 2016 report recommendations.

This research has been designed to have impact on both academic and on communities well beyond academia, including (1) policy-makers in information rights; (2) national, local government and third sector agencies who employ both health and social care professionals and recordkeeping and information professionals; (3) public and third sector bodies who deliver welfare services to citizens; (4) professional and practitioner groups especially those in recordkeeping; and (5) the wider public as represented through data subjects. These communities all form part of the information ecology we are studying. The project will produce these outputs: a co-authored recordkeeping protocol; a final symposium (60 attendees); 1 professional conference presentation (300 delegates); 2 seminar papers (professional & academic, 30 delegates each); 1 international conference paper (200-600 delegates); 2 academic journal articles (eg Health Informatics Journal and Government Information Quarterly, both worldwide reach).

The pathways to impact and our impact strategy are framed by the communities of practice directly engaged in the project, who represent the specific groups most likely to be interested in the research and therefore best placed to support research impacts. The participatory approach to engagement with data subjects, representing a wider public (5) enables a key group of beneficiaries to frame the progress and approach to the research in a way that will focus on their concerns. Co-development of a recordkeeping protocol to support the implementation of the findings of the Care Leavers report, will provide a significant opportunity for collaboration and the communication of research findings. It should result in improved approaches to creating, preserving and making accessible records relating to individuals who have been in care.

The research will also contribute to the public debate (in the UK and internationally) about data sharing and linked data and the social contract of trust, informing policy making in information rights (1). We will seek to improve understanding of and approaches to recordkeeping among health and social care professionals and their employers (2 and 3 above), so that health and social care services are properly recorded and informed for the benefit of patients, the lives of children in care are better documented for the benefit of the care leavers, but also so that inquiries into historic abuse can be properly underpinned by documentation. We will work with the Access to Care Records Campaign Group and Care Leavers' Association to develop this strand of impact, including a co-created recordkeeping protocol.

Recordkeepers, information professionals, and information access officers (4) need to be kept up-to-date with changes in the legal framework and guidance on best practice. We have the agreement of the IRMS Working Group (set up to advise information professionals about recordkeeping considerations to support IICSA) to work with us on this project, so that this research provides a timely intervention with the potential for policy and practice impact. Working with IRMS and ARA (both represented on the Advisory Group), we will contribute to revisions of the Data Protection Code of Practice. We will disseminate research findings to information professional practitioners by making at least one professional conference presentation (eg Information and Records Management Society (IRMS) annual conference, attended by 300 recordkeeping professionals and practitioners), via the Charity Archivists and Records Managers Group (CHARM), writing updates for professional newsletters eg IRMS Bulletin and via the project website.

We will also draw all groups together in the final phase leading to a symposium (for 60 delegates) which will enable the researchers to share the findings and understandings of each perspective with all the groups and agree some cooperative future actions.