COVID-19 risk perceptions and precautions among the elderly: A study of CALD adults in South Australia

Background: Coping with COVID-19 is a challenge for culturally and linguistically diverse (CALD) older adults. In Australia, little attention has been given to understanding associations between cultural contexts, health promotion, and socio-emotional and mental health challenges of older CALD adults during the COVID-19 pandemic. Therefore, we have collected data from older CALD adults to examine their COVID-19 risk perceptions and its association with their health precautions, behavioural dimensions and emergency preparation. Methods: A cross-sectional survey was conducted in South Australia. The CALD population aged 60 years and above were approached through 11 South Australian multicultural NGOs. Results: We provide the details of 155 older CALD South Australians’ demographics, risk perceptions, health precautions (problem-and-emotion-focused), behavioural dimensions and emergency preparation. The explanatory variables included demographic characteristics (age, gender, education and ethnicity); and risk perception (cognitive [likelihood of being affected] and affective dimension [fear and general concerns], and psychometric paradigm [severity, controllability, and personal impact]. The outcome measure variables were health precautions (problem-focused and emotion-focused), behavioral adaptions and emergency preparation. Conclusions: This dataset may help the researchers who investigate multicultural health or aged care in the pandemic and or who may have interest to link with other datasets and secondary use of this primary dataset in order to develop culturally tailored pandemic-related response plan. The data set is available from Harvard Dataverse.

Ruxolitinib Re-Treatment in Patients with Myelofibrosis: Real-World Evidence on Patient Characteristics and Outcomes

Ruxolitinib is an FDA-approved treatment of intermediate- and high-risk myelofibrosis. In the phase 3 COMFORT studies, ruxolitinib reduced spleen volume in patients with myelofibrosis, with a median time to response of 3 months. However, nearly 20% of patients discontinued by month 4 with few treatment options available following discontinuation of ruxolitinib treatment. In this study, 2 independent patient care data sources were queried (Cardinal Health Oncology Provider Extended Network [OPEN] and HealthCore Integrated Research Environment [HIRE®]), and a retrospective review of medical charts was conducted. Patients aged ≥18 years with a diagnosis of myelofibrosis (primary or secondary), use of ruxolitinib for myelofibrosis, and documented physician-directed ruxolitinib interruption were included. Among 26 included patients, pre-interruption median (interquartile range [IQR]) ruxolitinib treatment duration was 123 (57–391, OPEN) and 110 (37–148, HIRE) days. Half the patients interrupted treatment within 3 months, commonly for adverse events (42% and 71%, respectively). After restarting ruxolitinib, median (IQR) re-treatment duration was 196 (54–553) and 166 (108–262) days, respectively. Consistent with previous reports, symptoms and spleen size improved in (OPEN/HIRE) 45%/43% and 40%/33% of evaluable patients, respectively. Further studies investigating the management of dose modifications and interruptions are needed to optimize benefit from ruxolitinib therapy.

Do You Still Trust?

Recently, data breaches, especially insider data breaches, have become increasingly common. However, there is a limited amount of research on the factors associated with the decrease in users' trust in response to these events. In this study, social role theory and socioemotional selectivity theory are applied to understand the role of age (younger and older), biological (male and female) and cultural (masculinity and femininity) gender, and the four dimensions of privacy concern-collection, secondary use, unauthorized access, and error-on initial trust and the corresponding decrease in trust associated with the three trust beliefs of ability, benevolence, and integrity. A scenario-based approach is used to focus on a case study of an insider breach. The findings also provide helpful insights into the comparative roles of trust builders (e.g., reputation and design) and trust crashers (e.g., privacy concerns) in the process of trust building and trust decrease in different demographics (e.g., older and younger, males and females) for overall trust and trusting beliefs. Theoretical, managerial, and social implications are discussed.

Australian General Practitioner Perceptions to Sharing Clinical Data for Secondary Use: A Mixed Method Approach

ObjectiveThe potential for data collected in general practice to be linked and used to address health system challenges of maintaining quality care, accessibility and safety, including pandemic support, has led to an increased interest in public acceptability of data sharing, however practitioners have rarely been asked to share their opinions on the topic. This paper attempts to gain an understanding of general practitioners’ perceptions on routinely sharing practice data for both population health planning and healthcare research both from an Australian and international perspective.Materials and MethodsA mixed methods approach combining an initial online survey followed by face-to-face interviews (before and during COVID-19), designed to identify the barriers and facilitators to sharing data, were conducted on a representative sample of general practitioners across Western Australia (WA).ResultsEighty online surveys and ten face-to-face interviews with general practitioners were conducted from Nov 2020 – May 2021. Although respondents overwhelmingly identified the importance of population health research, their willingness to participate in data sharing programs was determined by a perception of trust associated with the organisation collecting and analysing shared data; a clearly defined purpose and process of collected data; including a governance structure providing confidence in the data sharing initiative simultaneously enabling a process of data sovereignty and autonomy.DiscussionResults indicate strong agreement around the importance of sharing patient’s medical data for population and health research and planning. Concerns pertaining to lack of trust, governance and secondary use of data continue to be a setback to data sharing with implications for primary care business models being raised.ConclusionTo further increase general practitioner’s confidence in sharing their clinical data, efforts should be directed towards implementing a robust data governance structure with an emphasis on transparency and representative stakeholder inclusion as well as identifying the role of government and government funded organisations, as well as building trust with the entities collecting and analysing the data.

The Secondary Use of Data to Support Medication Safety in the Hospital Setting: A Systematic Review and Narrative Synthesis

Objectives: To conduct a systematic review and narrative synthesis of interventions based on secondary use of data (SUD) from electronic prescribing (EP) and electronic hospital pharmacy (EHP) systems and their effectiveness in secondary care, and to identify factors influencing SUD. Method: The search strategy had four facets: 1. Electronic databases, 2. Medication safety, 3. Hospitals and quality/safety, and 4. SUD. Searches were conducted within EMBASE, Medline, CINAHL, and International Pharmaceutical Abstracts. Empirical SUD intervention studies that aimed to improve medication safety and/or quality, and any studies providing insight into factors affecting SUD were included. Results: We identified nine quantitative studies of SUD interventions and five qualitative studies. SUD interventions were complex and fell into four categories, with ‘provision of feedback’ the most common. While heterogeneous, the majority of quantitative studies reported positive findings in improving medication safety but little detail was provided on the interventions implemented. The five qualitative studies collectively provide an overview of the SUD process, which typically comprised nine steps from data identification to analysis. Factors influencing the SUD process were electronic systems implementation and level of functionality, knowledge and skills of SUD users, organisational context, and policies around data reuse and security. Discussion and Conclusion: The majority of the SUD interventions were successful in improving medication safety, however, what contributes to this success needs further exploration. From synthesis of research evidence in this review, an integrative framework was developed to describe the processes, mechanisms, and barriers for effective SUD.

Patient Experiences, Trust, and Preferences for Health Data Sharing

PURPOSE: Scholars have examined patients' attitudes toward secondary use of routinely collected clinical data for research and quality improvement. Evidence suggests that trust in health care organizations and physicians is critical. Less is known about experiences that shape trust and how they influence data sharing preferences. MATERIALS AND METHODS: To explore learning health care system (LHS) ethics, democratic deliberations were hosted from June 2017 to May 2018. A total of 217 patients with cancer participated in facilitated group discussion. Transcripts were coded independently. Finalized codes were organized into themes using interpretive description and thematic analysis. Two previous analyses reported on patient preferences for consent and data use; this final analysis focuses on the influence of personal lived experiences of the health care system, including interactions with providers and insurers, on trust and preferences for data sharing. RESULTS: Qualitative analysis identified four domains of patients' lived experiences raised in the context of the policy discussions: (1) the quality of care received, (2) the impact of health care costs, (3) the transparency and communication displayed by a provider or an insurer to the patient, and (4) the extent to which care coordination was hindered or facilitated by the interchange between a provider and an insurer. Patients discussed their trust in health care decision makers and their opinions about LHS data sharing. CONCLUSION: Additional resources, infrastructure, regulations, and practice innovations are needed to improve patients' experiences with and trust in the health care system. Those who seek to build LHSs may also need to consider improvement in other aspects of care delivery.

MedTAG: a portable and customizable annotation tool for biomedical documents

Background Semantic annotators and Natural Language Processing (NLP) methods for Named Entity Recognition and Linking (NER+L) require plenty of training and test data, especially in the biomedical domain. Despite the abundance of unstructured biomedical data, the lack of richly annotated biomedical datasets poses hindrances to the further development of NER+L algorithms for any effective secondary use. In addition, manual annotation of biomedical documents performed by physicians and experts is a costly and time-consuming task. To support, organize and speed up the annotation process, we introduce MedTAG, a collaborative biomedical annotation tool that is open-source, platform-independent, and free to use/distribute. Results We present the main features of MedTAG and how it has been employed in the histopathology domain by physicians and experts to annotate more than seven thousand clinical reports manually. We compare MedTAG with a set of well-established biomedical annotation tools, including BioQRator, ezTag, MyMiner, and tagtog, comparing their pros and cons with those of MedTag. We highlight that MedTAG is one of the very few open-source tools provided with an open license and a straightforward installation procedure supporting cross-platform use. Conclusions MedTAG has been designed according to five requirements (i.e. available, distributable, installable, workable and schematic) defined in a recent extensive review of manual annotation tools. Moreover, MedTAG satisfies 20 over 22 criteria specified in the same study.

Direct-to-consumer genetic testing: Prospective users’ attitudes toward information about ancestry and biological relationships

Direct-to-consumer genetic testing is marketed as a tool to uncover ancestry and kin. Recent studies of actual and potential users have demonstrated that individuals’ responses to the use of these tests for these purposes are complex, with privacy, disruptive consequences, potential for misuse, and secondary use by law enforcement cited as potential concerns. We conducted six focus groups with a diverse sample of participants (n = 62) who were aware of but had not used direct-to-consumer genetic tests, in an effort to understand more about what people considering these tests think about the potential value, risks, and benefits of such testing, taking into account use by third parties, such as potential kin and law enforcement. Participants differed widely in the perceived value of direct-to-consumer genetic tests for ancestry and kinship information for their own lives, including the desirability of contact with previously unknown relatives. Some perceived ancestry testing as mere curiosity or entertainment, while others, particularly those who had gaps in their family history, few living relatives, or who were adopted, saw greater value. Concerns about intrusion into one’s life by purported kin and control of data were widespread, with many participants expressing concern about secondary uses of data that could harm users or their families. The use of direct-to-consumer genetic tests data for forensic genealogy elicited a particularly wide array of reactions, both spontaneously and in response to specific discussion prompts, mirroring the current public debate about law enforcement access to such data. The themes uncovered through our investigation warrant specific attention in the continued development of the science, policy, and practice of commercial direct-to-consumer genetic testing.