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

记录和档案作为记忆的试金石，使组织、社区、家庭和个人能够访问他们共享的历史和价值观。在家庭环境中，书面记录和照片记录了重大事件(出生、结婚、死亡)、庆祝场合(生日、假期、周年纪念)和里程碑(第一天上学、通过考试、找到工作)。家庭和个人记录越来越多地以数字形式创建和保存：正在出现帮助个人数字记录保存的方法。拟议的研究将考虑如何更好地了解公共和志愿部门的信息权生态，以支持个人和公共当局为公共利益和个人信息权而导航。我们的数据收集将收集来自数据对象、福利专业人员、信息专业人员和研究数据用户的定性数据，以了解研究问题的所有四个角度。许多关于个人生活的记录是由个人与之互动的组织和机构在家庭单位之外创建和保存的。在卫生和社会护理领域，这包括地方当局(如日托中心、儿童保育、教育)、NHS医院信托基金和全科医生(卫生保健)、慈善机构和第三部门机构(如精神卫生保健、社会护理)、国家政策和数据机构，如NHS英格兰和卫生和社会护理信息中心(HSCIC)和其他机构。在这种提供服务的混合经济中，往往不清楚谁负责记录个人收到的服务，记录系统通常与其他组织的系统不兼容，也不存在共享记录协议。为了公共利益而在机构之间共享数据的尝试(例如提议将医院事件数据和全科医生数据联系起来的“care.data”)未能就获取数据共享和信息权、隐私以及同意和选择退出的性质建立信任的社会契约。记录保存不善对公共服务的运作和对历史虐待行为进行全面调查(如儿童性虐待独立调查)的能力产生了负面影响。这项研究将更好地了解这一景观，并使公民、专业人员和研究人员今后能够分享良好做法和改进记录保存。在接受照料的儿童和离开照料的儿童的具体情况下，糟糕的记录对个人生活的影响成为关注的焦点，这些儿童通常缺乏家庭背景和家庭记忆。2016年一份关于护理离职人员和获取社会护理档案的报告警告称，寻求查看自己档案的护理离职人员面临着信息权“摇号”。离开照顾者通常没有家庭记忆或记录，然而，关于他们生活的机构记录往往忽视了个人的需求，将他们视为“数据对象”，拒绝提供有关兄弟姐妹或父母等“第三方”的信息。作为这一研究项目的一部分，我们将与护理离职人员协会共同制定一项记录保存协议，以协助执行2016年报告的建议。

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.