41 research outputs found

    Using Lessons from Health Care to Protect the Privacy of Library Users: Guidelines for the De-Identification of Library Data based on HIPAA

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    While libraries have employed policies to protect the data about use of their services, these policies are rarely specific or standardized. Since 1996 the U.S. healthcare system has been grappling with the Health Insurance Portability and Accountability Act (HIPAA), which is designed to provide those handling personal health information with standardized, definitive instructions as to the protection of data. In this work, the authors briefly discuss the present situation of privacy policies about library use data, outline the HIPAA guidelines to understand parallels between the two, and finally propose methods to create a de-identified library data warehouse based on HIPAA for the protection of user privacy

    A Model Made of Paper: Clinicians Navigate the Electronic Health Record

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    The electronic health record (EHR) is actually an aggregation of individual clinical documents. Medical records document not only the knowledge domains of clinical practice, but the work processes and practices that support these domains. Human-computer interaction is an important factor in EHR system success: researchers have argued that clinician readers consciously perceive the context of production, and integrate an understanding of the producer into their understanding of the data. In support, this paper reports findings of an information retrieval study using a simulated EHR containing deidentified clinical documents. Physician subjects verbally demonstrated use of a mental model of the paper medical record during their navigation of the system. Clinicians may actively apply a mental representation of their domain of practice—and actively refer to this paperbased knowledge base—when they access medical data. An understanding of the mental models that clinicians use would greatly inform our understanding of EHR systems

    Using Lessons from Health Care to Protect the Privacy of Library Users: Guidelines for the De-Identification of Library Data based on HIPAA

    Get PDF
    While libraries have employed policies to protect the data about use of their services, these policies are rarely specific or standardized. Since 1996 the U.S. healthcare system has been grappling with the Health Insurance Portability and Accountability Act (HIPAA), which is designed to provide those handling personal health information with standardized, definitive instructions as to the protection of data. In this work, the authors briefly discuss the present situation of privacy policies about library use data, outline the HIPAA guidelines to understand parallels between the two, and finally propose methods to create a de-identified library data warehouse based on HIPAA for the protection of user privacy

    Making Primarily Professional Terms More Comprehensible to the Lay Audience

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    Certain texts, such as clinical reports and clinical trial records, are written by professionals for professionals while being increasingly accessed by lay people. To improve the comprehensibility of such documents to the lay audience, we conducted a pilot study to analyze terms used primarily by health professionals, and explore ways to make them more comprehensible to lay people

    British Society of Gastroenterology guidance for management of inflammatory bowel disease during the COVID-19 pandemic.

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    The COVID-19 pandemic is putting unprecedented pressures on healthcare systems globally. Early insights have been made possible by rapid sharing of data from China and Italy. In the UK, we have rapidly mobilised inflammatory bowel disease (IBD) centres in order that preparations can be made to protect our patients and the clinical services they rely on. This is a novel coronavirus; much is unknown as to how it will affect people with IBD. We also lack information about the impact of different immunosuppressive medications. To address this uncertainty, the British Society of Gastroenterology (BSG) COVID-19 IBD Working Group has used the best available data and expert opinion to generate a risk grid that groups patients into highest, moderate and lowest risk categories. This grid allows patients to be instructed to follow the UK government's advice for shielding, stringent and standard advice regarding social distancing, respectively. Further considerations are given to service provision, medical and surgical therapy, endoscopy, imaging and clinical trials

    Research Reports Andean Past 6

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    The Adult Repetitive Behaviours Questionnaire-2 (RBQ-2A): A Self-Report Measure of Restricted and Repetitive Behaviours

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    In two studies we developed and tested a new self-report measure of restricted and repetitive behaviours (RRB) suitable for adults. In Study 1, The Repetitive Behaviours Questionnaire-2 for adults (RBQ-2A) was completed by a sample of 163 neurotypical adults. Principal components analysis revealed two components: Repetitive Motor Behaviours and Insistence on Sameness. In Study 2, the mean RBQ-2A scores of a group of adults with autism spectrum disorder (ASD; N = 29) were compared to an adult neurotypical group (N = 37). The ASD sample had significantly higher total and subscale scores. These results indicate that the RBQ-2A has utility as a self-report questionnaire measure of RRBs suitable for adults, with potential clinical application

    Adding 6 months of androgen deprivation therapy to postoperative radiotherapy for prostate cancer: a comparison of short-course versus no androgen deprivation therapy in the RADICALS-HD randomised controlled trial

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    Background Previous evidence indicates that adjuvant, short-course androgen deprivation therapy (ADT) improves metastasis-free survival when given with primary radiotherapy for intermediate-risk and high-risk localised prostate cancer. However, the value of ADT with postoperative radiotherapy after radical prostatectomy is unclear. Methods RADICALS-HD was an international randomised controlled trial to test the efficacy of ADT used in combination with postoperative radiotherapy for prostate cancer. Key eligibility criteria were indication for radiotherapy after radical prostatectomy for prostate cancer, prostate-specific antigen less than 5 ng/mL, absence of metastatic disease, and written consent. Participants were randomly assigned (1:1) to radiotherapy alone (no ADT) or radiotherapy with 6 months of ADT (short-course ADT), using monthly subcutaneous gonadotropin-releasing hormone analogue injections, daily oral bicalutamide monotherapy 150 mg, or monthly subcutaneous degarelix. Randomisation was done centrally through minimisation with a random element, stratified by Gleason score, positive margins, radiotherapy timing, planned radiotherapy schedule, and planned type of ADT, in a computerised system. The allocated treatment was not masked. The primary outcome measure was metastasis-free survival, defined as distant metastasis arising from prostate cancer or death from any cause. Standard survival analysis methods were used, accounting for randomisation stratification factors. The trial had 80% power with two-sided α of 5% to detect an absolute increase in 10-year metastasis-free survival from 80% to 86% (hazard ratio [HR] 0·67). Analyses followed the intention-to-treat principle. The trial is registered with the ISRCTN registry, ISRCTN40814031, and ClinicalTrials.gov, NCT00541047. Findings Between Nov 22, 2007, and June 29, 2015, 1480 patients (median age 66 years [IQR 61–69]) were randomly assigned to receive no ADT (n=737) or short-course ADT (n=743) in addition to postoperative radiotherapy at 121 centres in Canada, Denmark, Ireland, and the UK. With a median follow-up of 9·0 years (IQR 7·1–10·1), metastasis-free survival events were reported for 268 participants (142 in the no ADT group and 126 in the short-course ADT group; HR 0·886 [95% CI 0·688–1·140], p=0·35). 10-year metastasis-free survival was 79·2% (95% CI 75·4–82·5) in the no ADT group and 80·4% (76·6–83·6) in the short-course ADT group. Toxicity of grade 3 or higher was reported for 121 (17%) of 737 participants in the no ADT group and 100 (14%) of 743 in the short-course ADT group (p=0·15), with no treatment-related deaths. Interpretation Metastatic disease is uncommon following postoperative bed radiotherapy after radical prostatectomy. Adding 6 months of ADT to this radiotherapy did not improve metastasis-free survival compared with no ADT. These findings do not support the use of short-course ADT with postoperative radiotherapy in this patient population

    Duration of androgen deprivation therapy with postoperative radiotherapy for prostate cancer: a comparison of long-course versus short-course androgen deprivation therapy in the RADICALS-HD randomised trial