Personal information privacy: what's next?

In recent events, user-privacy has been a main focus for all technological and data-holding companies, due to the global interest in protecting personal information. Regulations like the General Data Protection Regulation (GDPR) set firm laws and penalties around the handling and misuse of user data. These privacy rules apply regardless of the data structure, whether it being structured or unstructured. In this work, we perform a summary of the available algorithms for providing privacy in structured data, and analyze the popular tools that handle privacy in textual data; namely medical data. We found that although these tools provide adequate results in terms of de-identifying medical records by removing personal identifyers (HIPAA PHI), they fall short in terms of being generalizable to satisfy nonmedical fields. In addition, the metrics used to measure the performance of these privacy algorithms don't take into account the differences in significance that every identifier has. Finally, we propose the concept of a domain-independent adaptable system that learns the significance of terms in a given text, in terms of person identifiability and text utility, and is then able to provide metrics to help find a balance between user privacy and data usability

The Role of Information and Communication Technology in Autism Care Case Study: Sudan

abstract: This research aims to serve as a starting point to the exploration of the current status of autism in Sudan and how to best utilize available Information and Communication Technology (ICT) to educate and support parents and educators. Currently, there is no official published data on the prevalence of autism in Sudan or the related available services and facilities. To attempt to expand upon the limited existing knowledge, the researcher collected all available data and information through Sudanese Facebook groups and pages. The research was observational in nature. Findings indicated that raising a child with Autism Spectrum Disorder (ASD) in Sudan can be rather challenging, particularly for parents who do not have easy access to ASD treatment. In general, parents in this study expressed minimal satisfaction with the available treatments and services that their children were receiving. Parents repeatedly addressed problems regarding a lack of access, the overwhelming expense, and the need for more awareness and acceptance of autism within Sudanese society. In response to these issues, some of the parents formed small support groups and met regularly to share experiences and discuss solutions. Additionally, some parents are creating discrete Facebook pages to help normalize autism and combat misinformation.Dissertation/ThesisMasters Thesis Global Technology and Development 201

Balancing patient control and practical access policy for electronic health records via blockchain technology

Electronic health records (EHRs) have revolutionized the health information technology domain, as patient data can be easily stored and accessed within and among medical institutions. However, in working towards nationwide patient engagement and interoperability goals, recent literature adopts a very patient-centric model---patients own their universal, holistic medical records and control exactly who can access their health data. I contend that this approach is largely impractical for healthcare workflows, where many separate providers require access to health records for care delivery. My work investigates the potential of a blockchain network to balance patient control and provider accessibility with a two-fold approach. First, I conduct a survey investigation to identify patient concerns and determine the level of control patients would like over their health information. Second, I implement a blockchain network prototype to address the spectrum of patient control preferences and automate practical access policy. There are conflicting demands amongst patients and providers for EHR access---privacy versus flexibility. Yet, I find blockchain technology, when manipulated to model access states, automate an organizational role-based access scheme, and provide an immutable history of behavior in the network, to be a very plausible solution for balancing patient desires and provider needs. My approach is, to my knowledge, the first example of blockchain\u27s use for less patient-centric, nudge theory-based EHR access control, an idea that could align access control interests as academics, the government, and the healthcare industry make strides towards interoperable, universal patient records

An investigation of healthcare professionals’ experiences of training and using electronic prescribing systems: four literature reviews and two qualitative studies undertaken in the UK hospital context

Electronic prescribing (ePrescribing) is the process of ordering medicines electronically for a patient and has been associated with reduced medication errors and improved patient safety. However, these systems have also been associated with unintended adverse consequences. There is a lack of published research about users’ experiences of these systems in UK hospitals. The aim of this research was therefore to firstly describe the literature pertaining to the recent developments and persisting issues with ePrescribing and clinical decision support systems (CDS) (chapter 2). Two further systematic literature reviews (chapters 3 and 4) were then conducted to understand the unintended consequences of ePrescribing and clinical decision support (CDS) systems across both adult and paediatric patients. These revealed a taxonomy of factors, which have contributed to errors during use of these systems e.g., the screen layout, default settings and inappropriate drug-dosage support. The researcher then conducted a qualitative study (chapters 7-10) to explore users’ experiences of using and being trained to use ePrescribing systems. This study involved conducting semi-structured interviews and observations, which revealed key challenges facing users, including issues with using the ‘Medication List’ and how information was presented. Users experienced benefits and challenges when customising the system, including the screen display; however, the process was sometimes overly complex. Users also described the benefits and challenges associated with different forms of interruptive and passive CDS. Order sets, for instance, encouraged more efficient prescribing, yet users often found them difficult to find within the system. A lack of training resulted in users failing to use all features of the ePrescribing system and left some healthcare staff feeling underprepared for using the system in their role. A further literature review (chapter 5) was then performed to complement emerging themes relating to how users were trained to use ePrescribing systems, which were generated as part of a qualitative study. This review revealed the range of approaches used to train users and the need for further research in this area. The literature review and qualitative study-based findings led to a follow-on study (chapter 10), whereby the researcher conducted semi-structured interviews to examine how users were trained to use ePrescribing systems across four NHS Hospital Trusts. A range of approaches were used to train users; tailored training, using clinically specific scenarios or matching the user’s profession to that of the trainer were preferred over lectures and e-learning may offer an efficient way of training large numbers of staff. However, further research is needed to investigate this and whether alternative approaches such as the use of students as trainers could be useful. This programme of work revealed the importance of human factors and user involvement in the design and ongoing development of ePrescribing systems. Training also played a role in users’ experiences of using the system and hospitals should carefully consider the training approaches used. This thesis provides recommendations gathered from the literature and primary data collection that can help inform organisations, system developers and further research in this area