Linkage of people experiencing homeless using two consent models

Objectives Administrative data linkage is relatively under-utilised as a way of generating evidence to guide homelessness policy and service delivery in the UK. Our objective is to contribute insight into the ethical, legal, and practical challenges of using data linkage with data from people experiencing homelessness (PEH). Approach We outline the data collection and linkage methodologies for two UK-based studies related to PEH. The first design aimed to explore the acceptability and feasibility of consented linkage of trial data (‘Moving On’ trial) to NHS Digital records in a cohort of recruited PEH in two English local authorities (n=50). The second design used administrative data originating from a local authority homelessness service in Wales (n=17,000 cases) to explore educational outcomes of children in homeless households. The resultant data linkage rates are contrasted and discussed in relation to the mechanisms for obtaining and linking personal data. Results The Moving On trial demonstrated high rates of consent for data linkage and the ability to collect sufficient personal identifiable data to increase the chance of successful matching. Aggregate match rates will be discussed. Of the roughly 17,000 cases included in the local authority administrative data, 75% could be linked to unique individuals using probabilistic matching and were therefor ‘useable’ in linkage research. The proportion of useable cases rapidly decreased as the cut-off for matching quality was increased, to roughly 50% of cases being useable when a 99% match probability cut-off was used. Matching rates were higher amongst priority need homeless cases, possibly reflecting business need to identify and work closely with these people. Conclusion Where homelessness administrative data systems are not designed to enable data linkage, low matching rates can result, reducing study sample sizes and potentially leading to bias towards more extreme cases of homelessness if missed-matches are not random. Consented linkage within large-scale trials offers one possibility for generating long-term evidence

The information analysis center concept as developed by the Radiation Shielding Information Center in its computer codes activities

Information analysis center concept and computer codes for calculating radiation transport, and shield design

Available computer codes and data for radiation transport analysis

The Radiation Shielding Information Center (RSIC), sponsored and supported by the Energy Research and Development Administration (ERDA) and the Defense Nuclear Agency (DNA), is a technical institute serving the radiation transport and shielding community. It acquires, selects, stores, retrieves, evaluates, analyzes, synthesizes, and disseminates information on shielding and ionizing radiation transport. The major activities include: (1) operating a computer-based information system and answering inquiries on radiation analysis, (2) collecting, checking out, packaging, and distributing large computer codes, and evaluated and processed data libraries. The data packages include multigroup coupled neutron-gamma-ray cross sections and kerma coefficients, other nuclear data, and radiation transport benchmark problem results. (auth

Integrating technology into complex intervention trial processes: a case study

This is the final version of the article. Available from BioMed Central via the DOI in this record.Background Trials of complex interventions are associated with high costs and burdens in terms of paperwork, management, data collection, validation, and intervention fidelity assessment occurring across multiple sites. Traditional data collection methods rely on paper-based forms, where processing can be time-consuming and error rates high. Electronic source data collection can potentially address many of these inefficiencies, but has not routinely been used in complex intervention trials. Here we present the use of an on-line system for managing all aspects of data handling and for the monitoring of trial processes in a multicentre trial of a complex intervention. We custom built a web-accessible software application for the delivery of ENGAGE-HD, a multicentre trial of a complex physical therapy intervention. The software incorporated functionality for participant randomisation, data collection and assessment of intervention fidelity. It was accessible to multiple users with differing levels of access depending on required usage or to maintain blinding. Each site was supplied with a 4G-enabled iPad for accessing the system. The impact of this system was quantified through review of data quality and collation of feedback from site coordinators and assessors through structured process interviews. Results The custom-built system was an efficient tool for collecting data and managing trial processes. Although the set-up time required was significant, using the system resulted in an overall data completion rate of 98.5% with a data query rate of 0.1%, the majority of which were resolved in under a week. Feedback from research staff indicated that the system was highly acceptable for use in a research environment. This was a reflection of the portability and accessibility of the system when using the iPad and its usefulness in aiding accurate data collection, intervention fidelity and general administration. Conclusions A combination of commercially available hardware and a bespoke online database designed to support data collection, intervention fidelity and trial progress provides a viable option for streamlining trial processes in a multicentre complex intervention trial. There is scope to further extend the system to cater for larger trials and add further functionality such as automatic reporting facilities and participant management support.The ENGAGE-HD trial was funded by Health and Social Care Wales, United Kingdom. The South East Wales Trials Unit is funded by the Wales Assembly Government through Health and Care Research Wales

Optimising paediatric afferent component early warning systems : a hermeneutic systematic literature review and model development

Objective: To identify the core components of successful early warning systems for detecting and initiating action in response to clinical deterioration in paediatric inpatients. Methods: A hermeneutic systematic literature review informed by translational mobilisation theory and normalisation process theory was used to synthesise 82 studies of paediatric and adult early warning systems and interventions to support the detection of clinical deterioration and escalation of care. This method, which is designed to develop understanding, enabled the development of a propositional model of an optimal afferent component early warning system. Results: Detecting deterioration and initiating action in response to clinical deterioration in paediatric inpatients involves several challenges, and the potential failure points in early warning systems are well documented. Track and trigger tools (TTT) are commonly used and have value in supporting key mechanisms of action but depend on certain preconditions for successful integration into practice. Several supplementary interventions have been proposed to improve the effectiveness of early warning systems but there is limited evidence to recommend their wider use, due to the weight and quality of the evidence; the extent to which systems are conditioned by the local clinical context; and the need to attend to system component relationships, which do not work in isolation. While it was not possible to make empirical recommendations for practice, the review methodology generated theoretical inferences about the core components of an optimal system for early warning systems. These are presented as a propositional model conceptualised as three subsystems: detection, planning and action. Conclusions: There is a growing consensus of the need to think beyond TTTs in improving action to detect and respond to clinical deterioration. Clinical teams wishing to improve early warning systems can use the model to consider systematically the constellation of factors necessary to support detection, planning and action and consider how these arrangements can be implemented in their local context

Recruitment and retention of participants from socioeconomically deprived communities : lessons from the Awareness and Beliefs About Cancer (ABACus3) randomised controlled trial

Background Recruitment of research participants poses challenges in socioeconomically deprived areas. The Awareness and Beliefs About Cancer (ABACus) phase 3 Randomised Control Trial recruited adult participants from socioeconomically deprived areas using a combined healthcare/community engagement model. We report the strategies used to successfully recruit and retain our trial participant sample. Methods Community and healthcare settings in areas of high socioeconomic deprivation were identified by lay advisors who recruited participants opportunistically or by appointment. Follow-up was done by telephone or post at 2-weeks and 6-months after recruitment, and all participants were offered financial incentives. Qualitative interviews were conducted with lay advisors regarding their experience and reflections. Results The lay advisors identified and contacted 107 potential recruitment venues across South and West Yorkshire and South East Wales of which 41.1% (n = 42) were opened for recruitment. A total of 234 participants were recruited, with 91% (n = 212) retention at 2-weeks and 85% (n = 199) at 6-months. Community settings yielded 75% (n = 176) of participants. Participants had a mean age of 61.3 years and 63.3% (n = 148) were female, with 66% (n = 154) resident in the most deprived geographical areas. Lay advisors described recruitment as intensive, although engaging participants was easier in community settings. Conclusions The ABACus3 trial achieved recruitment and high retention with a population that is often “hard to reach” or entirely missed in health research. Strategies were specifically tailored to engage the venues and adult residents of highly deprived areas. Future studies recruiting adults living in the most deprived areas might benefit from community recruitment and from collaborating with local gatekeepers who are key to engagement. This study adheres to CONSORT guidelines. Trial registration Retrospectively registered with ISRCTN (http://www.isrctn.com/ISRCTN16872545) on 12.01.2018

Supporting physical activity engagement in people with Huntington's disease (ENGAGEHD): study protocol for a randomized controlled feasibility trial.

Background: Huntington’s disease (HD) is a complex, single-gene inherited neurodegenerative condition resulting in symptoms that occur across a wide range of neurological domains, including cognitive, behavioral and motor. The benefits of regular physical activity for people with HD are widely recognized. However, a number of factors can prohibit sustained exercise and activity. The purpose of this trial is to explore the feasibility, acceptability and effectiveness of a physical activity intervention program targeted for people with early- to mid-stage HD. Methods/Design: The proposed trial is a single blind, multisite, exploratory, randomized controlled feasibility trial of a physical activity intervention. A total of 62 participants with genetically confirmed HD will be recruited. Each participant will be involved in the trial for 26 weeks. Participants will be randomized immediately following the baseline assessment into either a physical activity intervention or a social contact control intervention. The physical activity intervention is framed around self-determination theory placed within a broader behaviour change wheel framework. An HD-specific workbook and individual goal setting will be utilized over six 1:1 sessions, with interim telephone calls. All participants will be reassessed at 16 weeks following the baseline assessment, and then again at a final follow-up assessment 26 weeks later. At the end of the study, all participants will be offered a brief version of the alternative intervention, with one home visit and one follow-up telephone call. Discussion: Engaging and supporting people with HD in a regular physical activity program raises a number of challenges. The physical activity intervention and the comparator social interaction intervention have been developed following consultation with people with HD and their families. Each are individually tailored and determined on individual needs and goals. The results from this trial will provide guidance for the development of definitive trials. Trial registration: The trial was registered with ISRCTN (http://www.isrctn.com/ISRCTN65378754) on 13 March 2014

Paediatric early warning systems: not a simple answer to a complex question.

Paediatric early warning systems (PEWS) to reduce in-hospital mortality have been a laudable endeavour. Evaluation of their impact has rarely examined the internal validity of the components of PEWS in achieving desired outcomes. We highlight the assumptions made regarding the mode of action of PEWS and, as PEWS become more commonplace, this paper asks whether we really understand their function, process and outcome. [Abstract copyright: © Author(s) (or their employer(s)) 2022. Re-use permitted under CC BY. Published by BMJ.