Streamlining governmental processes by putting citizens in control of their personal data

Governments typically store large amounts of personal information on their citizens, such as a home address, marital status, and occupation, to offer public services. Because governments consist of various governmental agencies, multiple copies of this data often exist. This raises concerns regarding data consistency, privacy, and access control, especially under recent legal frameworks such as GDPR. To solve these problems, and to give citizens true control over their data, we explore an approach using the decentralised Solid ecosystem, which enables citizens to maintain their data in personal data pods. We have applied this approach to two high-impact use cases, where citizen information is stored in personal data pods, and both public and private organisations are selectively granted access. Our findings indicate that Solid allows reshaping the relationship between citizens, their personal data, and the applications they use in the public and private sector. We strongly believe that the insights from this Flemish Solid Pilot can speed up the process for public administrations and private organisations that want to put the users in control of their data

Visions and Challenges in Managing and Preserving Data to Measure Quality of Life

Health-related data analysis plays an important role in self-knowledge, disease prevention, diagnosis, and quality of life assessment. With the advent of data-driven solutions, a myriad of apps and Internet of Things (IoT) devices (wearables, home-medical sensors, etc) facilitates data collection and provide cloud storage with a central administration. More recently, blockchain and other distributed ledgers became available as alternative storage options based on decentralised organisation systems. We bring attention to the human data bleeding problem and argue that neither centralised nor decentralised system organisations are a magic bullet for data-driven innovation if individual, community and societal values are ignored. The motivation for this position paper is to elaborate on strategies to protect privacy as well as to encourage data sharing and support open data without requiring a complex access protocol for researchers. Our main contribution is to outline the design of a self-regulated Open Health Archive (OHA) system with focus on quality of life (QoL) data.Comment: DSS 2018: Data-Driven Self-Regulating System

CamFlow: Managed Data-sharing for Cloud Services

A model of cloud services is emerging whereby a few trusted providers manage the underlying hardware and communications whereas many companies build on this infrastructure to offer higher level, cloud-hosted PaaS services and/or SaaS applications. From the start, strong isolation between cloud tenants was seen to be of paramount importance, provided first by virtual machines (VM) and later by containers, which share the operating system (OS) kernel. Increasingly it is the case that applications also require facilities to effect isolation and protection of data managed by those applications. They also require flexible data sharing with other applications, often across the traditional cloud-isolation boundaries; for example, when government provides many related services for its citizens on a common platform. Similar considerations apply to the end-users of applications. But in particular, the incorporation of cloud services within `Internet of Things' architectures is driving the requirements for both protection and cross-application data sharing. These concerns relate to the management of data. Traditional access control is application and principal/role specific, applied at policy enforcement points, after which there is no subsequent control over where data flows; a crucial issue once data has left its owner's control by cloud-hosted applications and within cloud-services. Information Flow Control (IFC), in addition, offers system-wide, end-to-end, flow control based on the properties of the data. We discuss the potential of cloud-deployed IFC for enforcing owners' dataflow policy with regard to protection and sharing, as well as safeguarding against malicious or buggy software. In addition, the audit log associated with IFC provides transparency, giving configurable system-wide visibility over data flows. [...]Comment: 14 pages, 8 figure

Successful paediatric HIV treatment in rural primary care in Africa

<p>Objective: Clinical outcomes of HIV-infected children on antiretroviral treatment (ART) in a decentralised, nurse/counsellor-led programme.</p> <p>Design: Clinical cohort.</p> <p>Setting: KwaZulu-Natal, South Africa.</p> <p>Patients: HIV-infected children aged <= 15 years on ART, June 2004-2008.</p> <p>Main outcome measures: Survival according to baseline characteristics including age, WHO clinical stage, haemoglobin and CD4%, was assessed in Kaplan-Meier analyses. Hazard ratios for mortality were estimated using Cox proportional hazards regression and changes in laboratory parameters and weight-for-age z scores after 6-12 months' treatment were calculated.</p> <p>Results: 477 HIV-infected children began ART at a median age of 74 months (range 4-180), median CD4 count (CD4%) of 433 cells/mm(3) (17%) and median HIV viral load of log 4.2 copies/ml; 105 (22%) were on treatment for tuberculosis and 317 (76.6%) were WHO stage 3/4. There were significant increases after ART initiation in CD4% (17% vs 22%; p<0.001), haemoglobin (9.9 vs 11.7 g/l; p <= 0.001) and albumin (30 vs 36 g/l; p <= 0.001). 32 (6.7%) children died over 732 child-years of follow-up (43.7 deaths/1000 child-years; 95% CI 32.7 to 58.2), 17 (53.1%) within 90 days of treatment initiation; median age of death was 84 (IQR 10-181) months. Children with baseline haemoglobin <= 8 g/l were more likely to die (adjusted HR 4.5; 95% CI 1.6 to 12.3), as were those aged <18 months compared with >60 months (adjusted HR 3.2; 95% CI 1.2 to 9.1).</p> <p>Conclusions Good clinical outcomes in HIV-infected children on ART are possible in a rural, decentralised service. Few young children are on ART, highlighting the urgent need to identify HIV-exposed infants.</p&gt

New Advanced Technologies to Provide Decentralised and Secure Access to Medical Records: Case Studies in Oncology

The main problem for health professionals and patients in accessing information is that this information is very often distributed over many medical records and locations. This problem is particularly acute in cancerology because patients may be treated for many years and undergo a variety of examinations. Recent advances in technology make it feasible to gain access to medical records anywhere and anytime, allowing the physician or the patient to gather information from an “ephemeral electronic patient record”. However, this easy access to data is accompanied by the requirement for improved security (confidentiality, traceability, integrity, ...) and this issue needs to be addressed. In this paper we propose and discuss a decentralised approach based on recent advances in information sharing and protection: Grid technologies and watermarking methodologies. The potential impact of these technologies for oncology is illustrated by the examples of two experimental cases: a cancer surveillance network and a radiotherapy treatment plan. It is expected that the proposed approach will constitute the basis of a future secure “google-like” access to medical records

A critical examination of the effectiveness of faculty-based student learning support

This thesis presents an investigation into the effectiveness of faculty-based student learning support and comprises three volumes. Volume 1 provides an overview of the background literature, research methodology, ethical and reliability considerations linked to two projects whose overarching theme is the support and improvement of the student experience. The overview begins with an outline of the aim of this thesis, followed by a synopsis of the literature concerning student support in higher education and the use of technology to support learners. The methodological framework is then discussed and a brief introduction to the projects is provided. The overview concludes with an exploration of the effectiveness of faculty-based student learning support and the presentation of a new blended approach to the organisation, delivery and typology of advising. This seeks to demonstrate the strength of a blended approach and thus makes a contribution to the practice, theory and method of supporting student learning. Volume 2 discusses the Advice Shop project and considers the processes, methods and ethics of this student learning support. A summary of eight interventions is presented together with details of how the project was subsequently rolled out across the University. A consideration of the organisational model and personnel involved in student advising is also offered. The volume concludes with student and staff feedback and a discussion of how the project aims have been achieved. Evidence of the research output and components of practice relating to Project 1 can be found in Volume2 Part 2. Volume 3 presents a discussion of Project 2 - the use of technology to support learners. The project presents two technology-enhanced interventions - an electronic student attendance monitoring scheme, and the development of two online learner support tools using QuestionMark Perception as the delivery software. The methods and ethical considerations used to establish and implement these interventions are present together with feedback from students and staff. The volume concludes with a discussion of how the aims of the project have been achieved. Evidence of the research output and components of practice relating to Project 2 can be found in Volume 3 Part 2

Following Guidelines for Drug-Resistant Tuberculosis: “Yes, it’s a challenge”

BACKGROUND: Drug-resistant tuberculosis (DR-TB) is a major contributor to antimicrobial resistance (AMR) globally and is projected to be responsible for up to a quarter of AMR-associated deaths in the future. Management of DR-TB is increasingly decentralised to primary healthcare settings, and simultaneously becoming more complex due to a growing range of treatment options (e.g. novel agents, shorter regimens). This is reflected in the numerous recent updates to international guidelines and as such understanding the barriers and enablers to how healthcare workers access and use guidelines is vital. MATERIAL AND METHODS: We used an established psychological framework – the theoretical domains framework (TDF) – to construct and analyse an online survey and focus groups to explore healthcare workers current use of DR-TB guidelines in South Africa. We aimed to identify barriers and enablers with which to direct future attempts at improving guideline use. RESULTS: There were 19 responses to the online survey and 14 participants in two focus groups. 28% used the most up-to-date national guidelines, 79% accessed guidelines primarily on electronic devices. The TDF domains of ‘Social Influences’ (mean Likert score = 4.3) and ‘Beliefs about Consequences’ (4.2) were key enablers, with healthcare workers encouraged to use guidelines and also recognising the value in doing so. ‘Environmental Resources’ (3.7) and ‘Knowledge’ (3.3) were key barriers with limited, or variable access to guidelines and lack of confidence using them being notable issues. This was most noted for certain subgroups: children, HIV co-infected, pregnant women (2.7). DISCUSSION: Current use of DR-TB guidelines in South Africa is suboptimal. Planned interventions should focus on overcoming the identified key barriers and might include an increased use of digital tools