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

点击翻译按钮获取中文摘要

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.