The role of governing boards in improving patient experience: Attitudes and activities of health service boards in Victoria, Australia

The authors sought to determine the attitudes of public health service board members and senior executives toward patient experience and to describe the governance activities of the boards in this area. The study was based on an online survey of 322 board members from 85 public health services and semi-structured interviews with 35 board members and senior executives from 13 public health services in Victoria, Australia. The results showed that while some health service boards had high aspirations and clear plans for improving patient experience, others remained sluggish or even cynically resistant to changing their existing models of care. Interviewees associated with highly active boards described initiatives to improve patient experience at multiple levels in the organisation - from boardroom to bedside. Among less active boards, efforts to improve patient experience tended to be more ad hoc and there was greater uncertainty about how to scale up or systematise. The authors conclude that addressing the gap between the responsibility of boards to address patient experience, and the reality of their governance activities, requires a nuanced understanding of the attitudes and activities of board members. The approaches taken by “positive attitude, high activity” boards could be showcased as exemplars for others

Sources of error in measurement of minimal residual disease in childhood acute lymphoblastic leukemia

This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.Introduction The level of minimal residual disease (MRD) in marrow predicts outcome and guides treatment in childhood acute lymphoblastic leukemia (ALL) but accurate prediction depends on accurate measurement. Methods Forty-one children with ALL were studied at the end of induction. Two samples were obtained from each iliac spine and each sample was assayed twice. Assay, sample and side-to-side variation were quantified by analysis of variance and presumptively incorrect decisions related to high-risk disease were determined using the result from each MRD assay, the mean MRD in the patient as the measure of the true value, and each of 3 different MRD cut-off levels which have been used for making decisions on treatment. Results Variation between assays, samples and sides each differed significantly from zero and the overall standard deviation for a single MRD estimation was 0.60 logs. Multifocal residual disease seemed to be at least partly responsible for the variation between samples. Decision errors occurred at a frequency of 13–14% when the mean patient MRD was between 10−2 and 10−5. Decision errors were observed only for an MRD result within 1 log of the cut-off value used for assessing high risk. Depending on the cut-off used, 31–40% of MRD results were within 1 log of the cut-off value and 21–16% of such results would have resulted in a decision error. Conclusion When the result obtained for the level of MRD is within 1 log of the cut-off value used for making decisions, variation in the assay and/or sampling may result in a misleading assessment of the true level of marrow MRD. This may lead to an incorrect decision on treatment

Cases before Australian Courts and Tribunals concerning Questions of Public International Law 2022

The Sydney Centre for International Law (SCIL), within the University of Sydney Law School, was established in 2003 as a centre of excellence in research and teaching in international law. Each year, the Centre’s interns prepare an article for the Australian Year Book of International Law about the role of international law in Australian courts, under supervision of SCIL staff. This year's article reviews decisions made in 2022 by select federal courts (the High Court of Australia, Federal Court of Australia, and newly created Federal Circuit and Family Court of Australia), along with the state and territory supreme and appeal courts, in which international law played a part

Disorders of sex development : insights from targeted gene sequencing of a large international patient cohort

Background: Disorders of sex development (DSD) are congenital conditions in which chromosomal, gonadal, or phenotypic sex is atypical. Clinical management of DSD is often difficult and currently only 13% of patients receive an accurate clinical genetic diagnosis. To address this we have developed a massively parallel sequencing targeted DSD gene panel which allows us to sequence all 64 known diagnostic DSD genes and candidate genes simultaneously. Results: We analyzed DNA from the largest reported international cohort of patients with DSD (278 patients with 46, XY DSD and 48 with 46, XX DSD). Our targeted gene panel compares favorably with other sequencing platforms. We found a total of 28 diagnostic genes that are implicated in DSD, highlighting the genetic spectrum of this disorder. Sequencing revealed 93 previously unreported DSD gene variants. Overall, we identified a likely genetic diagnosis in 43% of patients with 46, XY DSD. In patients with 46, XY disorders of androgen synthesis and action the genetic diagnosis rate reached 60%. Surprisingly, little difference in diagnostic rate was observed between singletons and trios. In many cases our findings are informative as to the likely cause of the DSD, which will facilitate clinical management. Conclusions: Our massively parallel sequencing targeted DSD gene panel represents an economical means of improving the genetic diagnostic capability for patients affected by DSD. Implementation of this panel in a large cohort of patients has expanded our understanding of the underlying genetic etiology of DSD. The inclusion of research candidate genes also provides an invaluable resource for future identification of novel genes

Difference between the left and right sides in the mean MRD value for each side.

<p>Each mean was the result of 2 assays on each of 2 samples. The results are for the 29 patients analysed by ANOVA.</p

Incorrect decisions grouped by the mean MRD level of the patient.

<p>The percent of assays is the percent of decision errors in the assays from patients with MRD between 10⁻² and 10⁻⁵. The results shown are data from all 41 patients.</p