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"In a world struggling with environmental and social problems resistant to current solutions, education needs to explore ways to 'enlarge the space of the possible' rather than only 'replicate the existing possible'. To respond to this challenge, the book draws on a range of thinking to trouble dominant Western philosophical conceptions which continue to have wide ranging influence in education worldwide and which limit more sustainable ways to be in the world together. It argues for the importance of opening spaces in and through which unique subjects can emerge, bringing potential for new ways of being and as yet unimagined futures. The book makes a valuable contribution to international growing interest in Arendtian thinking, complexity and emergence, feminist thinking, the emerging field of anticipation studies, the posthuman and engagement with Indigenous scholarship and practices in ways which attempt to be non-appropriating. Sustainability continues to be a vital theme in education, and the book responds to a desire to encourage education which invites more sustainable processes and ways of being in addition to education which limits itself to teaching about, or for, sustainability. Sustainable and Democratic Education will be of great interest to academics and practitioners working with sustainability, Indigenous scholarship, complexity theory and the posthuman and what these ideas can mean in and for education"--

BackgroundUK Longitudinal Linkage Collaboration (UK LLC) is the national Trusted Research Environment for the UK's longitudinal studies. The need for a clear way to communicate Longitudinal Population Study (LPS) participants' rights was identified through public contributor consultations. UK LLC gathered public views to inform meaningful discussion with NHS England, the National Data Guardian's Office, and the Health Research Authority to develop a new framework for agreeing consistency in assessment of the legal basis for linking participant self-reported data to participants' health records. The consultation flagged that the legislation around LPS data is complex, confusing, and often inaccessible. This means that it may prove difficult for LPS participants to fully understand who is allowed to access their data, for what purposes, under what circumstances and what their rights are.
IntroductionThe legal basis for using LPS data is complex. Of particular importance are the UK GDPR (General Data Protection Regulations), Common Law Duty of Confidentiality, Digital Economy Act (DEA) 2017 and Section 251 of the NHS Act 2016. Our vision was to produce transparency materials to help LPS participants understand LPS data and the law.
MethodsWe surveyed public contributors from UK LLC, Health Data Research UK and DATAMIND to establish current understanding. We worked in partnership with UK LLC's Public Advisory Group (PAG) and external organisations to produce a series of infographics (over time also available in audio, BSL and additional languages) to reach as wide an audience as possible. We collaborated with DATAMIND throughout the project sharing insights and ideas.
ResultsA total of 56 people participated in the survey, most of whom lived in England: 30% were LPS participants; 55% were aged 55 and over; and 18% identified as belonging to an ethnic minority group. Survey results showed that the levels of awareness of the laws/legal principles relating to the use of LPS data is generally low. The DEA was least well-known, with 11% of people aware of this legislation. The most well-known among the infographic topics was GDPR, with 88% awareness. We co-developed key messages for LPS participants on what they should be aware of as individuals, including what they should expect from their LPS. This was not a straightforward process due to the exemptions and conditions under each law/legal principle. This led to focus on highlighting the practical implications for participants rather than explaining the laws/legal principles. Across the series, participants are directed to official organisations for further information.
ConclusionsThis series of transparency materials provides a more accessible and easy-to-understand way for LPS participants to fully understand who is allowed to access their data, for what purposes, under what circumstances and what their rights are.

ObjectivesUK longitudinal population studies have complex governance structures and participant safeguards. As a new Trusted Research Environment (TRE) for >20 longitudinal studies, the UK Longitudinal Linkage Collaboration (UK LLC) must ensure effective public/participant input to make central design and operational decisions whilst retaining participant trust and acceptability.
ApproachThe UK LLC's governance model is based on the principle that participant trust lies with their study; not supporting infrastructure providers. Therefore, the UK LLC takes responsibility for system governance and data sharing agreements whilst studies retain control over participant data and its uses. Our public/participant model reflects this. We have established centralised groups to advise on data access applications and on UK LLC communications. Simultaneously we work with study managers to gain insight from their involvement work and also commission UK LLC specific activities. Including participants as well as the public helps elicit a range of input and views.
ResultsWe have integrated public/participant input across the UK LLC by recruiting: a public panel to review applications; an advisory panel to contribute to our methodological development; and public/participant advisors to sit on the UK LLC Strategic Advisory Committee. We also work with studies' involvement managers to draw insights from, and coordinate new, study-level involvement.
This has informed the development of data application frameworks and brings a public viewpoint to decisions regarding linkage of functionally anonymous participant NHS records for research. The involvement of study participant groups has shaped the design of data flows into the TRE (e.g., where some studies do not permit the flow of address data for geospatial research) and has helped set a 'social contract' regarding acceptable UK LLC data use.
ConclusionWorking with public/participant representatives directly, and in partnership with study managers, we have developed safeguards and integrated a public/participant voice into key UK LLC activities. Our ongoing aim is to develop a sustainable new-way-of-working for record linkage in longitudinal research which is acceptable to participants and the public.