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868 result(s) for "Weiss, Rachel"
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Patient stakeholder engagement in research: A narrative review to describe foundational principles and best practice activities
Background Health research is evolving to include patient stakeholders (patients, families and caregivers) as active members of research teams. Frameworks describing the conceptual foundations underlying this engagement and strategies detailing best practice activities to facilitate engagement have been published to guide these efforts. Objective The aims of this narrative review are to identify, quantify and summarize (a) the conceptual foundational principles of patient stakeholder engagement in research and (b) best practice activities to support these efforts. Search Strategy, Inclusion Criteria, Data Extraction and Synthesis We accessed a publicly available repository of systematically identified literature related to patient engagement in research. Two reviewers independently screened articles to identify relevant articles and ed data. Main Results We identified 990 potentially relevant articles of which 935 (94.4%) were excluded and 55 (5.6%) relevant. The most commonly reported foundational principles were “respect” (n = 25, 45%) and “equitable power between all team members” (n = 21, 38%). Creating “trust between patient stakeholders and researchers” was described in 17 (31%) articles. Twenty‐seven (49%) articles emphasized the importance of providing training and education for both patient stakeholder and researchers. Providing financial compensation for patient stakeholders’ time and expertise was noted in 19 (35%) articles. Twenty articles (36%) emphasized regular, bidirectional dialogue between patient partners and researchers as important for successful engagement. Discussion and Conclusions Engaging patient stakeholders in research as partners presents an opportunity to design, implement and disseminate patient‐centred research. This review creates an overarching foundational framework for authentic and sustainable partnerships between patient stakeholders and researchers.
Making it up : photographic fictions
Published \"to coincide with the launch of the V&A's ... Photography Centre in autumn 2018, 'Making it Up' shows how, throughout its history, photography has been used to depict fiction as well as fact. With c. 100 photographs supported by extended commentaries and an introduction of about 1,500 words, [the book] illustrates that, though we often recognize the staged, constructed, or the tableau as a feature of contemporary art photography, this way of working is almost as old as the practice itself\"--Provided by publisher.
Feasibility of Umbilical Cord Blood Collection in Neonates at Risk of Brain Damage—A Step Toward Autologous Cell Therapy for a High-risk Population
Evidence for umbilical cord blood (UCB) cell therapies as a potential intervention for neurological diseases is emerging. To date, most existing trials worked with allogenic cells, as the collection of autologous UCB from high-risk patients is challenging. In obstetric emergencies the collection cannot be planned. In preterm infants, late cord clamping and anatomic conditions may reduce the availability. The aim of the present study was to assess the feasibility of UCB collection in neonates at increased risk of brain damage. Infants from four high-risk groups were included: newborns with perinatal hypoxemia, gestational age (GA) ≤30 + 0 weeks and/or birthweight <1,500 g, intrauterine growth restriction (IUGR), or monochorionic twins with twin-to-twin transfusion syndrome (TTTS). Feasibility of collection, quantity and quality of obtained UCB [total nucleated cell count (TNC), volume, sterility, and cell viability], and neonatal outcome were assessed. UCB collection was successful in 141 of 177 enrolled patients (hypoxemia n = 10; GA ≤30 + 0 weeks n = 54; IUGR n = 71; TTTS n = 6). Twenty-six cases were missed. The amount of missed cases per month declined over the time. Volume of collected UCB ranged widely (median: 24.5 ml, range: 5.0–102 ml) and contained a median of 0.77 × 108 TNC (range: 0.01–13.0 × 108). TNC and UCB volume correlated significantly with GA. A total of 10.7% (19/177) of included neonates developed brain lesions. To conclude, collection of UCB in neonates at high risk of brain damage is feasible with a multidisciplinary approach and intensive training. High prevalence of brain damage makes UCB collection worthwhile. Collected autologous UCB from mature neonates harbors a sufficient cell count for potential therapy. However, quality and quantity of obtained UCB are critical for potential therapy in preterm infants. Therefore, for extremely preterm infants alternative cell sources such as UCB tissue should be investigated for autologous treatment options because of the low yield of UCB.
Metabolic Drivers and Rescuers of Heart Failure
Phosphocreatine (PCr) also plays an important role in buffering the high-energy phosphates in the heart, with (PCr) concentrations - 1.5-fold higher than ATP concentrations.3 Due to extremely high ATP hydrolysis rates and relatively low PCr and ATP pool sizes, constant ATP generation is required so that high-energy phosphate pools are not depleted within a matter of seconds.4 The principal cardiac metabolic pathways and how they are altered in hypertrophy and heart failure are summarized in Figure 1. Altered Metabolism in Hypertrophy and Heart Failure Decreased Fat Oxidation and Overall Oxidative Capacity In both human heart failure patients and animal models of hypertrophy/failure, one of the most consistent metabolic findings is a reduction in cardiac fatty acid uptake and oxidation.5\"7 This decrease in fat oxidation is due, at least in part, to a transcriptional downregulation of fat oxidation enzymes and transporters, and other mitochondrial enzymes.6,8\"10 As the heart normally relies on fat oxidation for the majority of ATP synthesis, unsurprisingly, failing human hearts contain significantly decreased ATP and PCr levels.3 Patients with fatty acid oxidation disorders as well as mouse models of cardiac fat oxidation enzyme/transporter deficiency can develop cardiomyopathy11\"14 suggesting that loss of fat oxidation directly contributes to heart failure pathology. With increased glucose uptake and decreased glucose oxidation, one would expect glycogen stores to increase, as we have found in failing mitochondrial pyruvate carrier-deficient hearts.1617 Indeed, G6P is an allosteric activator of glycogen synthase, the rate-limiting step of glycogen formation.22 Interestingly, in hypertrophied hearts, it has been suggested that glycolysis is increased from exogenous glucose, but glycogenolysis remains normal.23 Typically, glycogen stores are very low in cardiomyocytes, and it is well-established that glycogen storage diseases are associated with cardiac hypertrophy and cardiomyopathy24 One potential mechanism for cardiac glycogen accumulation affecting hypertrophic growth would be that glycogen can sequester and inhibit the activation of the energy sensor adenosine monophosphate-activated protein kinase (AMPK),25 leading to mTOR activation and anabolic growth. In support of this, it should be noted that mice with cardiac deletion of carnitine palmitoyltransferase 2 and defective fat oxidation develop heart failure that is not rescued by a ketogenic diet.13 Due to the severe carbohydrate restriction involved with a ketogenic diet, glycemia and insulinemia levels are decreased, likely leading to significantly reduced cardiac glucose metabolism. [...]in our opinion a ketogenic diet improves heart failure by both limiting flux through the glucose utilization pathways that appear to drive hypertrophic growth, as well as reinvigorating cardiac fat uptake and oxidation.
A Comparison of Three Brief Depression Measures in an Acute Psychiatric Population: CES-D-10, QIDS-SR, and DASS-21-DEP
The CES-D-10, QIDS-SR, and DASS-21-DEP are brief self-report instruments for depression that have demonstrated strong psychometric properties in clinical and community samples. However, it is unclear whether any of the three instruments is superior for assessing depression and treatment response in an acute, diagnostically heterogeneous, treatment-seeking psychiatric population. The present study examined the relative psychometric properties of these instruments in order to inform selection of an optimal depression measure in 377 patients enrolled in a psychiatric partial hospital program. Results indicated that the three measures demonstrated good to excellent internal consistency and strong convergent validity. They also demonstrated fair to good diagnostic utility, although diagnostic cut-off scores were generally higher than in previous samples. The three measures also evidenced high sensitivity to change in depressive symptoms over treatment, with the QIDS-SR showing the strongest effect. The results of this study indicate that any of the three depression measures may satisfactorily assess depressive symptoms in an acute psychiatric population. Thus, selection of a specific assessment tool should be guided by the identified purpose of the assessment. In a partial hospital setting, the QIDS-SR may confer some advantages, such as correspondence with DSM criteria, greater sensitivity to change, and assessment of suicidality.
I'm Bringing Notice Back: Registration Alone Is Not Enough to Prompt Accrual of a Copyright Claim
On November 14, 2018, the United States Court of Appeals for the Second Circuit held, in Wilson v. Dynatone Publishing Co., that copyright registration alone is not enough to trigger accrual of an ownership claim. In so doing, the Second Circuit concluded that mere registration does not put a rational and attentive copyright owner on notice of adverse claims. The Second Circuit determined that holding otherwise would impose an onerous and impractical burden on authors to investigate the Copyright Office registry continuously to insure against registered illegitimate claims of authorship. Furthermore, the Second Circuit reasoned that such a holding would run counter to the purpose of 205 of the Copyright Act. Thus, the Second Circuit joined the Third, Sixth, and Seventh Circuits in a split from the First Circuit, which interpreted 205(c) to mean that registration is enough to put others on constructive notice of the author's ownership. As a result of the First Circuit's ruling, an author would be time-barred from asserting competing claims more than three years after another registered for sole ownership. This Comment argues that the Second Circuit's approach is correct because it furthers the legislative intent of the Copyright Act and distinguishes the unique facts of the First Circuit case. The Second Circuit's approach also promotes the protections of the copyright registration system by encouraging authors to register their creative works, while not imposing unrealistic obligations upon copyright owners that actually could deter registration.
A social semiotic approach to textbook analysis : the construction of the discourses of Pharmacology
This article takes a multimodal social semiotic approach to analysing educational textbooks. We are interested in the ways in which educational textbooks contribute to designing our social futures by constructing both the student and the discipline in a particular manner. While a textbook's primary purpose is to provide the reader with knowledge content about a specific topic, it also serves to conventionalise and entrench certain discipline-specific practices and values. A textbook simultaneously competes in an economic environment where the reader has a choice of many textbooks. The text, therefore, takes on a hybrid form, where marketisation and conversationalisation co-exist in dialogue with academic discourse. The article analyses the discourses of Pharmacology as constructed in two widely used Pharmacology textbooks in South Africa. We take a systemic functional approach which views texts as realising meaning in three ways, namely the ideational, the interpersonal and the textual. The analysis shows how one of the textbooks tends to establish a more democratic relationship between authors and readers, while constructing Pharmacology within a scientific discourse of drugs. The other textbook constructs a more traditional and hierarchical relationship between author and reader, yet tends to reinforce a clinical, patient-centred approach to Pharmacology. We argue that this kind of analysis is important when interrogating curriculum, as textbooks are crucial sites of struggle over discourse, meaning and power.
A Patient-Centered Environmental Scan of Inpatient Visitor Policies During the COVID-19 Pandemic
Researchers and patients conducted an environmental scan of policy documents and public-facing websites and abstracted data to describe COVID-19 adult inpatient visitor restrictions at 70 academic medical centers. We identified variations in how centers described and operationalized visitor policies. Then, we used the nominal group technique process to identify patient-centered information gaps in visitor policies and provide key recommendations for improvement. Recommendations were categorized into the following domains: 1) provision of comprehensive, consistent, and clear information; 2) accessible information for patients with limited English proficiency and health literacy; 3) COVID-19 related considerations; and 4) care team member methods of communication.
Upcoming: Connecting Research and Practice in University Instruction
This Scholarship of Teaching and Learning Study evaluates a digital storytelling project that taught students in a university class on youth programming to apply research on youth work to the practice of working with diverse, underserved youth. The study examines the project's learning outcomes, which targeted the higher levels of Bloom’s taxonomy. Critical thinking skills are essential to the scholarship of engagement, which asserts that academia finds relevance through engagement with public life.