Report to the Childhood Development Initiative on Archiving of C.D.I. Data

This report presents the ethical and legal issues involved in depositing data-sets of research for secondary use in Ireland

Secondary use of data recorded in primary care: insights from human computer interaction field studies

Introduction: Electronic health records from primary care, are now aggregated in a number of large datasets from primary care settings, containing both coded data and free-text. Secondary users can easily undertake analyses using coded data. However although the balance of information between these codes and free text is variable, they rarely use the information contained in doctors’ free-text notes - because of their ‘messy’ nature and the costs of ensuring anonymity. Our epidemiological studies within the Patient Records Enhancement Project has demonstrated that free text contains important information, that is often ignored. Method: Human computer interaction (HCI) studies, using qualitative approaches, can help us understand the reasons for variability in the balance of coded and free text data. We undertook field studies in six GP surgeries which included observations of record use across the surgery, video analysis of real patient consultations and interviews with a range of surgery staff. We also undertook ‘simulated’ consultations, with two medical actors playing the part of the patient, allowing us to standarise the patient across doctors and software systems. Results: Preliminary results suggest several reasons for variation in data recording. Doctors create notes in order to best manage patients with little consideration for use by others, and reported limited awareness of secondary uses of the information. Doctors often record and “read” a picture painted by the overall record of a consultation or record symptoms and signs in free text notes, and choose not to code a definite diagnosis. If coding, they often choose a more general non specific code, even when they have inferred and acted on a clear diagnosis. These approaches reflect processes of progressing from differential to definite diagnosis, and the surgery’s administrative and consultation processes. Conclusion: Our findings may explain apparent delays in diagnosis often observed in epidemiological analyses. The picture portrayed within records may not be at all clear to researchers relying on coded data. Our results have implications for secondary users of data and assessment of data for quality of care. Follow on work might result in typologies of diseases liable to coded data deficits and support software development

Anonymising Clinical Data for Secondary Use

Secondary use of data already collected in clinical studies has become more and more popular in recent years, with the commitment of the pharmaceutical industry and many academic institutions in Europe and the US to provide access to their clinical trial data. Whilst this clearly provides societal benefit in helping to progress medical research, this has to be balanced against protection of subjects' privacy. There are two main scenarios for sharing subject data: within Clinical Study Reports and Individual Patient Level Data, and these scenarios have different associated risks and generally require different approaches. In any data sharing scenario, there is a trade-off between data utility and the risk of subject re-identification, and achieving this balance is key. Quantitative metrics can guide the amount of de-identification required and new technologies may also start to provide alternative ways to achieve the risk-utility balance.Comment: 25 page

Workshop Review: Timescapes Secondary Analysis Workshop

The Timescapes Workshops were offered as three, one day events held around the UK for researchers and practitioners to learn about and interact with the Timescapes Archive. This archive forms an integral part of a five year ESRC qualitative longitudinal study which explores and documents the changing nature of personal and family relationships. The workshop provided a forum from which to explore the purpose and value of archiving qualitative data sets for future (secondary use). Issues of ownership and consent were central to many of the discussion which took place throughout the day. In addition, the practical ‘hands-on’ session with the archive raised issues about the skill of archiving for future use as well as the optimal functionality and usability of an archive for secondary analysis. This workshop provided a useful addition to the training needs increasingly required by qualitative researchers where archiving for secondary use is now an important consideration within the design and dissemination phases of research

A brave new world of Ambient Intelligence in the casinos of Macau: reality or fiction?

The article scrutinizes the brave new world of ambient intelligence in the casinos of the Macau, Special Administrative Region of People´s Republic of China, chiefly in regards to the (candent) issue of privacy of the casino patrons. Moreover, this scientific article provides an overview about the secondary use of big data of the casino patrons for law enforcement purposes

The Secondary Use of Longitudinal Critical Care Data

Aims To examine the strengths and limitations of a novel United Kingdom (UK) critical care data resource that repurposes routinely collected physiological data for research. Exemplar clinical research studies will be developed to explore the unique longitudinal nature of the resource. Objectives - To evaluate the suitability of the National Institute for Health Research (NIHR) Critical Care theme of the Health Informatics Collaborative (CCHIC) data model as a representation of the Electronic Health Record (EHR) for secondary research use. - To conduct a data quality evaluation of data stored within the CC-HIC research database. - To use the CC-HIC research database to conduct two clinical research studies that make use of the longitudinal data supported by the CC-HIC: - The association between cumulative exposure to excess oxygen and outcomes in the critically ill. - The association between different morphologies of longitudinal physiology—in particular organ dysfunction—and outcomes in sepsis. The CC-HIC The EHR is now routinely used for the delivery of patient care throughout the United Kingdom (UK). This has presented the opportunity to learn from a large volume of routinely collected data. The CC-HIC data model represents 255 distinct clinical concepts including demographics, outcomes and granular longitudinal physiology. This model is used to harmonise EHR data of 12 contributing Intensive Care Units (ICUs). This thesis evaluates the suitability of the CC-HIC data model in this role and the quality of data within. While representing an important first step in this field, the CC-HIC data model lacks the necessary normalisation and semantic expressivity to excel in this role. The quality of the CC-HIC research database was variable between contributing sites. High levels of missing data, missing meta-data, non-standardised units and temporal drop out of submitted data are amongst the most challenging features to tackle. It is the principal finding of this thesis that the CC-HIC should transition towards implementing internationally agreed standards for interoperability. Exemplar Clinical Studies Two exemplar studies are presented, each designed to make use of the longitudinal data made available by the CC-HIC and address domains that are both contemporaneous and of importance to the critical care community. Exposure to Excess Oxygen Longitudinal data from the CC-HIC cohort were used to explore the association between the cumulative exposure to excess oxygen and outcomes in the critically ill. A small (likely less than 1% absolute risk reduction) dose-independent association was found between exposure to excess oxygen and mortality. The lack of dosedependency challenges a causal interpretation of these findings. Physiological Morphologies in Sepsis The joint modelling paradigm was applied to explore the different longitudinal profiles of organ failure in sepsis, while accounting for informative censoring from patient death. The rate of change of organ failure was found to play a more significan't role in outcomes than the absolute value of organ failure at a given moment. This has important implications for how the critical care community views the evolution of physiology in sepsis. DECOVID The Decoding COVID-19 (DECOVID) project is presented as future work. DECOVID is a collaborative data sharing project that pools clinical data from two large NHS trusts in England. Many of the lessons learnt from the prior work with the CC-HIC fed into the development of the DECOVID data model and its quality evaluation

Autonomous Multi-Chemistry Secondary-Use Battery Energy Storage

Battery energy storage is poised to play an increasingly important role in the modern electric grid. Not only does it provide the ability to change the time-of-day and magnitude of energy produced by renewable resources like wind and solar, it can also provide a host of other 3ancillary grid-stabilizing services. Cost remains a limiting factor in deploying energy storage systems large enough to provide these services on the scale required by an electric utility provider. Secondary-use electric vehicle batteries are a source of inexpensive energy storage materials that are not yet ready for the landfill but cannot operate in vehicles any longer. However, the wide range of manufacturers using different battery chemistries and configurations mean that integrating these batteries into a large-format system can be difficult. This work demonstrates methods for the autonomous integration and operation of a wide range of stationary energy storage battery chemistries. A fully autonomous battery characterization is paired with a novel system architecture and transactive optimization to create a system which can provide utility-scale energy services using a multitude of battery chemistries in the same system. These claims are verified using a combination of in-situ testing and a computer modelling testbed. Results are presented which demonstrate the ability of the system to combine a wide range of batteries into an effective single system