Parent Ethical Concerns About Patient Feedback Measures to Improve Pediatric Clinical Care

2020 ◽  
pp. 155626462096932
Author(s):  
Paulina S. Lim ◽  
Amy C. Lang ◽  
W. Hobart Davies
Keyword(s):  
Research Study ◽  
Clinical Care ◽  
Parent Satisfaction ◽  
Ethical Concerns ◽  
Patient Feedback ◽  
Potential Impact ◽  
Parental Willingness

There are limited studies evaluating parental willingness to complete patient feedback measures to improve pediatric clinical care. Parents were randomly assigned to read a vignette that varied by parent satisfaction and type of feedback measure. Parents were generally willing to participate in the hypothetical research study aimed to improve their child’s clinical care. Parents in the dissatisfied condition invited to participate in a potentially identifiable interview, compared to an anonymous survey, reported they would be less likely to respond honestly and more likely to feel obligated to participate. Researchers aiming to improve pediatric clinical care should be encouraged to use patient feedback measures that collect potentially identifiable information; however, researchers must consider the potential impact of parent satisfaction on feedback.

scholarly journals The intelligent library

2019 ◽  
Vol 37 (3) ◽  
pp. 418-435 ◽  
Author(s):  
Andrew M. Cox ◽  
Stephen Pinfield ◽  
Sophie Rutter
Keyword(s):  
Academic Libraries ◽  
Design Methodology ◽  
Resource Discovery ◽  
Library Directors ◽  
Content Type ◽  
Data Literacy ◽  
Ethical Concerns ◽  
Learning Challenges ◽  
Potential Impact ◽  
The Impact

Purpose The last few years have seen a surge of interest in artificial intelligence (AI). The purpose of this paper is to capture a snapshot of perceptions of the potential impact of AI on academic libraries and to reflect on its implications for library work. Design/methodology/approach The data for the study were interviews with 33 library directors, library commentators and experts in education and publishing. Findings Interviewees identified impacts of AI on search and resource discovery, on scholarly publishing and on learning. Challenges included libraries being left outside the focus of development, ethical concerns, intelligibility of decisions and data quality. Some threat to jobs was perceived. A number of potential roles for academic libraries were identified such as data acquisition and curation, AI tool acquisition and infrastructure building, aiding user navigation and data literacy. Originality/value This is one of the first papers to examine current expectations around the impact of AI on academic libraries. The authors propose the paradigm of the intelligent library to capture the potential impact of AI for libraries.

scholarly journals StudySearch: a web-based application for posting and searching clinical research studies

2016 ◽  
Vol 64 (3) ◽  
pp. 786-790
Author(s):  
Blair Gonsenhauser ◽  
Rose Hallarn ◽  
Daniel Carpenter ◽  
Michael F Para ◽  
Carson R Reider
Keyword(s):  
Research Study ◽  
Clinical Care ◽  
Ohio State University ◽  
State University ◽  
Eligibility Criteria ◽  
Web Based ◽  
User Behaviors ◽  
The Ohio State University ◽  
Study Participants ◽  
Research Studies

Participant accrual into research studies is critical to advancing clinical and translational research to clinical care. Without sufficient recruitment, the purpose of any research study cannot be realized; yet, low recruitment and enrollment of participants persist. StudySearch is a web-based application designed to provide an easily readable, publicly accessible, and searchable listing of IRB-approved protocols that are accruing study participants. The Regulatory, Recruitment and Biomedical Informatics Cores of the Center for Clinical and Translational Science (CCTS) at The Ohio State University developed this research study posting platform. Postings include basic descriptive information: study title, purpose of the study, eligibility criteria and study personnel contact information. Language concerning benefits and/or inducements is not included; therefore, while IRB approval for a study to be listed on StudySearch is required, IRB approval of the posted language is not. Studies are listed by one of two methods; one automated and one manual: (1). Studies registered on ClinicalTrials.gov are automatically downloaded once a month; or (2). Studies are submitted directly by researchers to the CCTS Regulatory Core staff. In either case, final language is a result of an iterative process between researchers and CCTS staff. Deployed in January 2011 at OSU, this application has grown to approximately 200 studies currently posted and 1500 unique visitors per month. Locally, StudySearch is part of the CCTS recruitment toolkit. Features continue to be modified to better accommodate user behaviors. Nationally, this open source application is available for use.

scholarly journals Therapeutic appropriation: a new concept in the ethics of clinical research

2016 ◽  
Vol 42 (12) ◽  
pp. 805-808 ◽  
Author(s):  
Rosalind McDougall ◽  
Dominique Martin ◽  
Lynn Gillam ◽  
Nina Hallowell ◽  
Alison Brookes ◽  
...  
Keyword(s):  
Primary Care ◽  
Clinical Research ◽  
Clinical Care ◽  
Research Participation ◽  
Therapeutic Benefit ◽  
Therapeutic Misconception ◽  
Ethical Problems ◽  
Ethical Concerns ◽  
Research Participants ◽  
Therapeutic Needs

Ethical concerns about therapeutic misconception have been raised since the early 1980s. This concept was originally described as research participants' assumptions that decisions relating to research interventions are made on the basis of their individual therapeutic needs. The term has since been used to refer to a range of ‘misunderstandings’ that research participants may have. In this paper, we describe a new concept—therapeutic appropriation. Therapeutic appropriation occurs when patients, or clinicians, actively reframe research participation as an opportunity to enhance patients' clinical care, while simultaneously acknowledging the generalised research aims. To illustrate the concept of therapeutic appropriation, we draw on data from an interview study which we conducted to investigate the experiences of patients and general practitioners involved in clinical trials in primary care. We argue that therapeutic appropriation has two key elements: comprehension that the research project is not necessarily aiming to benefit participants and the deliberate use of incidental features of the research for personal therapeutic benefit of various kinds. We conclude that therapeutic appropriation is a useful concept that refines understanding of potential ethical problems in clinical research, and points to strategies to address them.

Overview of Clinical Research Study Designs Using Examples From the Swallowing Literature

2017 ◽  
Vol 2 (13) ◽  
pp. 112-121
Author(s):  
Angela M. Malek ◽  
John S. Luque ◽  
Kendrea L. (Focht) Garand
Keyword(s):  
Research Study ◽  
Research Question ◽  
Ethical Concerns ◽  
Qualitative And Quantitative ◽  
Advantages And Disadvantages ◽  
Clinical Research Study ◽  
Design Type ◽  
Study Designs ◽  
Cost Feasibility ◽  
Selection Of

Study designs have numerous advantages and disadvantages that must be considered when addressing a research question, hypothesis, and objective. These include but are not limited to cost, feasibility, and ethical concerns. This review describes common study designs from the dysphagia literature with corresponding relevant examples for each design type. Further, discussion of the main differences between descriptive and analytical, qualitative and quantitative, observational and experimental, and retrospective and prospective study designs is provided. Specific aspects of various study designs, including matching, randomization, and blinding are also discussed. Finally, the importance of working closely with experts, such as epidemiologists and biostatisticians, in the early stages of research to assist with selection of the most appropriate study design and development of the research protocol is strongly recommended.

scholarly journals Ethical considerations in placebo-controlled randomised clinical trials

BJPsych Open ◽  
2015 ◽  
Vol 1 (1) ◽  
pp. e3-e4 ◽  
Author(s):  
Kenneth R. Kaufman
Keyword(s):  
Informed Consent ◽  
Randomised Clinical Trial ◽  
Evidence Based ◽  
Ethical Considerations ◽  
Double Blind ◽  
Ethical Concerns ◽  
Placebo Controls ◽  
Ethics Research ◽  
Potential Impact ◽  
Based Medicine

SummaryEthical considerations in standard medical care and clinical research are underpinnings to quality medicine. Similarly, the placebo-controlled double-blind randomised clinical trial is the gold standard for medical research and fundamental to the development of evidence-based medicine. Researchers and clinicians are challenged by ethical concerns in the informed consent with a need to maximise understanding and minimise therapeutic misconception. This editorial expands on themes raised by Chen et al's article ‘Disclosing the Potential Impact of Placebo Controls in Antidepressant Trials' and serves as an invitation for further submissions to BJPsych Open on ethics, research design and informed consent.

scholarly journals HOPES: An Integrative Digital Phenotyping Platform for Data Collection, Monitoring, and Machine Learning (Preprint)

2020 ◽  
Author(s):  
Xuancong Wang ◽  
Nikola Vouk ◽  
Creighton Heaukulani ◽  
Thisum Buddhika ◽  
Wijaya Martanto ◽  
...  
Keyword(s):  
Data Collection ◽  
Research Study ◽  
Clinical Care ◽  
Ease Of Use ◽  
Digital Device ◽  
Early Experiences ◽  
Digital Phenotyping ◽  
Test Use ◽  
Positive Engagement ◽  
Analyze Data

UNSTRUCTURED The collection of data from a personal digital device to characterize current health conditions and behaviors that determine how an individual’s health will evolve has been called digital phenotyping. In this paper, we describe the development of and early experiences with a comprehensive digital phenotyping platform: Health Outcomes through Positive Engagement and Self-Empowerment (HOPES). HOPES is based on the open-source <i>Beiwe</i> platform but adds a wider range of data collection, including the integration of wearable devices and further sensor collection from smartphones. Requirements were partly derived from a concurrent clinical trial for schizophrenia that required the development of significant capabilities in HOPES for security, privacy, ease of use, and scalability, based on a careful combination of public cloud and on-premises operation. We describe new data pipelines to clean, process, present, and analyze data. This includes a set of dashboards customized to the needs of research study operations and clinical care. A test use case for HOPES was described by analyzing the digital behavior of 22 participants during the SARS-CoV-2 pandemic.

scholarly journals 892. Determination of the Unavailability of Alternative Antiretroviral Formulations

2021 ◽  
Vol 8 (Supplement_1) ◽  
pp. S537-S538
Author(s):  
Milena M Murray ◽  
Devon Flynn ◽  
Leonard A Sowah ◽  
Aaron Austin ◽  
Eric Farmer
Keyword(s):  
Patient Care ◽  
Clinical Care ◽  
Advisory Board ◽  
Cost Of Care ◽  
People Living With Hiv ◽  
Material Support ◽  
Increased Risk ◽  
First Choice ◽  
Chewable Tablets ◽  
Potential Impact

Abstract Background Many pediatric and some adult people living with HIV (PLWH) are unable to swallow tablets and require alternative antiretroviral formulations (ARVF) such as liquids, chewable tablets, or powders for suspension. A growing number of issues with the timely procurement of alternative ARVF have been reported; the full scope of this problem is unknown. Without access to appropriate treatment, PLWH are at increased risk of poor disease outcomes. This study’s objective was to determine the scope of availability issues of ARVF and its potential impact on patient care. Methods An online survey invitation was sent to members of AAHIVM and the ACCP HIV PRN. Data collection included provider demographics, number of issues related to ARVF availability, time spent procuring ARVFs, and identification of unavailable formulations. To determine potential impact on clinical care and cost of care the time required to resolve shortages was summarized. Results The analyzable sample was 154, a majority of whom were pharmacists or physicians (n=132, 85.7%; Figure 1), in a clinical role (n=134, 87.0%), and serve pregnant patients (n=121, 79.2%). 85 (55.2%) practice at sites that provide care to &gt; 300 PLWH, 81 (52.6%) practice at sites that did not serve pediatric patients. 525 instances of gaps in care due to ARVF unavailability were reported. In 283 instances, a more complex regimen was prescribed due to first-choice ARVF unavailability. Providers also reported 186 situations in which a less optimal regimen was used and 140 cases of treatment delays. The average time spent to resolve such issues was 2.7 hrs (CI: 1.3 – 4.2). The longest time reported was 72 hrs; most providers spent 1 hr or less. The most common unavailable ARVF were branded ritonavir 80 mg/mL solution (n=12), zidovudine 50 mg/5 mL syrup (n=11), raltegravir 100 mg chewable tablets (n=11), and raltegravir 100 mg granules for suspension (n=10). Branded nevirapine 50 mg/5 mL suspension (n=7) and generic nevirapine 50mg/5ml powder for suspension (n=11) were also reported more frequently. Distribution of Respondents by Provider Type Conclusion Our report suggests the unavailability of alternative ARVF has the potential to significantly impact patient care. Further research is needed to identify the root causes of this problem to determine specific solutions. Disclosures Milena M. Murray, PharmD, MSc, BCIDP, AAHIVP, Merck (Speaker’s Bureau)Theratechnologies (Other Financial or Material Support, Medical Advisory Board) Eric Farmer, PharmD, BCPS, AAHIVP, TheraTechnologies, Inc (Other Financial or Material Support, Medical Advisory Board)

scholarly journals Assessing the Social Validity of the SAFMEDS Strategy From the Perspective of Teachers and Children

2021 ◽  
Vol 6 ◽  
Author(s):  
Kaydee Owen ◽  
Richard C. Watkins ◽  
Michael Beverley ◽  
J. Carl Hughes
Keyword(s):  
Research Study ◽  
Social Validity ◽  
Implementation Fidelity ◽  
Key Stakeholders ◽  
The Social ◽  
Teachers Experiences ◽  
Potential Impact ◽  
Training And Support ◽  
Academic Year ◽  
Insight Into

The Say-All-Fast-Minute-Every-Day-Shuffled (SAFMEDS) strategy promotes fluency across several skills and contexts. However, few studies have reported the social validity key stakeholders associate with using the strategy in schools. Assessing social validity may provide us with some insight into factors that may affect engagement, implementation fidelity, and persistent use of the intervention after the termination of a research study. Study 1 details the findings from a survey completed by teachers who have used the strategy in their schools (N = 55). Using thematic analysis, we identified three themes: 1) factors that promote and limit progress, 2) confidence, and 3) inherent advantages of the SAFMEDS strategy. These themes encapsulate teachers experiences of implementing the strategy under the real-word conditions of the classroom and the accompanying advantages and potential challenges they face. Within study 2, we discuss themes arising from interviews with children (N = 26) about their views and experiences of using the SAFMEDS strategy. These children had used the strategy with their teacher for one academic year to promote fast and accurate recall of arithmetic facts. Analysis of these transcripts revealed five further themes relating to children’s engagement with the strategy: 1) enjoyment, 2) data, 3) sense of achievement, 4) skills, and 5) home use. Collectively these themes have potential impact with regards to future training and support models for the SAFMEDS strategy.

scholarly journals Ethical conundrums in pediatric genomics

Hematology ◽  
2018 ◽  
Vol 2018 (1) ◽  
pp. 301-306 ◽  
Author(s):  
Seth J. Rotz ◽  
Eric Kodish
Keyword(s):  
Clinical Care ◽  
Genomic Testing ◽  
Ethical Concerns ◽  
Rigorous Approach ◽  
Pediatric Hematology ◽  
Disease Phenotypes ◽  
Testing Strategies ◽  
Whole Exome ◽  
The Cost ◽  
Clinical Genomic

Abstract Recent genomic discoveries have improved our understanding of many hematologic diseases and led to novel therapeutic options for many patients. The rapid decrease in the cost of genomic testing has enabled widespread use of clinical genomic testing. However, these advances are accompanied by concomitant challenging ethical concerns. In pediatrics, issues of informed consent for genomic testing, assent, and permission vary significantly by patient age and comprehension. Broader testing strategies, such as whole-exome or whole-genome sequencing, are more likely to yield incidental findings unrelated to the reason for the initial test, and plans to deal with these results when they occur are increasingly important. The lines of clinical care and research are becoming more blurry in the era of precision medicine in which approaches to individual genetic mutations (as opposed to disease phenotypes) occur with increased frequency. Finally, because justice is a fundamental ethical consideration, access to genomic testing and a rigorous approach to utility are critical to individual patients and the field of hematology. In this review, we use 3 cases of genomic testing in pediatric hematology to illustrate core ethical concerns and explore potential solutions.

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