scholarly journals Exploring the current practices, costs and benefits of FAIR Implementation in pharmaceutical Research and Development: A Qualitative Interview Study

2021 ◽  
pp. 1-14
Author(s):  
Ebtisam Alharbi ◽  
Rigina Skeva ◽  
Nick Juty ◽  
Caroline Jay ◽  
Carole Goble
Keyword(s):  
Research And Development ◽  
Cultural Change ◽  
Scientific Evidence ◽  
Scientific Data ◽  
Data Reuse ◽  
Potential Contribution ◽  
Costs And Benefits ◽  
Structured Interviews ◽  
Qualitative Interview Study ◽  
Fair Principles

Abstract The findable, accessible, interoperable, reusable (FAIR) principles for scientific data management and stewardship aim to facilitate data reuse at scale by both humans and machines. Research and development (R&D) in the pharmaceutical industry is becoming increasingly data driven, but managing its data assets according to FAIR principles remains costly and challenging. To date, little scientific evidence exists about how FAIR is currently implemented in practice, what its associated costs and benefits are, and how decisions are made about the retrospective FAIRification of datasets in pharmaceutical R&D. This paper reports the results of semi-structured interviews with 14 pharmaceutical professionals who participate in various stages of drug R&D in 7 pharmaceutical businesses. Inductive thematic analysis identified three primary themes of the benefits and costs of FAIRification, and the elements that influence the decision-making process for FAIRifying legacy datasets. Participants collectively acknowledged the potential contribution of FAIRification to data reusability in diverse research domains and the subsequent potential for cost-savings. Implementation costs, however, were still considered a barrier by participants, with the need for considerable expenditure in terms of resources, and cultural change. How decisions were made about FAIRification was influenced by legal and ethical considerations, management commitment, and data prioritisation. The findings have significant implications for those in the pharmaceutical R&D industry who are engaged in driving FAIR implementation, and for external parties who seek to better understand existing practices and challenges.

scholarly journals The role of research in improving responsiveness of palliative care to migrants and other underserved populations in the Netherlands: a qualitative interview study

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
M. Torensma ◽  
B. D. Onwuteaka-Philipsen ◽  
X. de Voogd ◽  
D. L. Willems ◽  
J. L. Suurmond
Keyword(s):  
Palliative Care ◽  
Healthcare Professionals ◽  
Underserved Populations ◽  
Ethnic Disparities ◽  
Migration Background ◽  
Structured Interviews ◽  
Migrant Populations ◽  
Funding Agencies ◽  
Qualitative Interview Study ◽  
Palliative Patient

Abstract Background The aging of migrant populations across Europe challenges researchers in palliative care to produce knowledge that can be used to respond to the needs of the growing group of patients with a migration background and address ethnic disparities in palliative care. The aim of this study was to identify what factors influence researchers’ efforts to address responsiveness of palliative care to patients with a migration background and other underserved populations in their projects. Methods We conducted semi-structured interviews with 11 researchers involved in seven projects under the Dutch national program for palliative care innovation. Results Researchers’ efforts to address responsiveness of palliative care in their projects were influenced by individual factors, i.e. awareness of the need for responsiveness to patients with a migration background; experience with responsiveness; and, differences in perceptions on responsiveness in palliative care. Researchers’ efforts were furthermore influenced by institutional factors, i.e. the interaction with healthcare institutions and healthcare professionals as they rely on their ability to identify the palliative patient with a migration background, address the topic of palliative care, and enrol these patients in research; scientific standards that limit the flexibility needed for responsive research; and, the responsiveness requirements set by funding agencies. Conclusion Researchers play a key role in ensuring research addresses responsiveness to patients with a migration background. Such responsiveness may also benefit other underserved populations. However, at times researchers lack the knowledge and experience needed for responsive research. To address this we recommend training in responsiveness for researchers in the field of palliative care. We also recommend training for healthcare professionals involved in research projects to increase enrolment of patients with a migration background and other underrepresented populations. Lastly, we encourage researchers as well as research institutions and funding agencies to allow flexibility in research practices and set a standard for responsive research practice.

scholarly journals “Smartphone Apps Are Cool, but Do They Help Me?”: A Qualitative Interview Study of Adolescents’ Perspectives on Using Smartphone Interventions to Manage Nonsuicidal Self-Injury

2021 ◽  
Vol 18 (6) ◽  
pp. 3289
Author(s):  
Anja Čuš ◽  
Julian Edbrooke-Childs ◽  
Susanne Ohmann ◽  
Paul L. Plener ◽  
Türkan Akkaya-Kalayci
Keyword(s):  
Mental Health ◽  
Young People ◽  
Mental Health Problems ◽  
Health Interventions ◽  
Structured Interviews ◽  
Related Factors ◽  
Self Injury ◽  
Qualitative Interview Study ◽  
Mental Health Interventions ◽  
Nonsuicidal Self Injury

Nonsuicidal self-injury (NSSI) is a major mental health problem associated with negative psychosocial outcomes and it most often starts in early adolescence. Despite this, adolescents are rarely involved in informing the development of interventions designed to address their mental health problems. This study aimed to (1) assess adolescents’ needs and preferences about future interventions that are delivered through smartphones and (2) develop a framework with implications for designing engaging digital mental health interventions. Fifteen adolescent girls, aged 12–18 years, who met diagnostic criteria for a current NSSI disorder and were in contact with mental health services, participated in semi-structured interviews. Following a reflexive thematic analysis approach, this study identified two main themes: (1) Experiences of NSSI (depicts the needs of young people related to their everyday experiences of managing NSSI) and (2) App in Context (portrays preferences of young people about smartphone interventions and reflects adolescents’ views on how technology itself can improve or hinder engaging with these interventions). Adolescent patients expressed interest in using smartphone mental health interventions if they recognize them as helpful, relevant for their life situation and easy to use. The developed framework suggests that digital mental health interventions are embedded in three contexts (i.e., person using the intervention, mental health condition, and technology-related factors) which together need to inform the development of engaging digital resources. To achieve this, the cooperation among people with lived experience, mental health experts, and human computer interaction professionals is vital.

scholarly journals POS1391 MEASURING SUBCLINICAL INFLAMMATION IN HAND AND FOREFOOT IN PATIENTS WITH ARTHRALGIA USING 1.5T OR 3.0T MRI: DOES FIELD STRENGTH MATTER?

2021 ◽  
Vol 80 (Suppl 1) ◽  
pp. 978.1-978
Author(s):  
D. Krijbolder ◽  
M. Verstappen ◽  
F. Wouters ◽  
L. R. Lard ◽  
P. D. De Buck ◽  
...  
Keyword(s):  
Field Strength ◽  
Scientific Evidence ◽  
Correlation Coefficients ◽  
Daily Practice ◽  
Scientific Data ◽  
Imaging Features ◽  
Subclinical Inflammation ◽  
The Individual ◽  
3.0T Mri ◽  
Inflammation Score

Background:Magnetic resonance imaging (MRI) of small joints sensitively detects inflammation. MRI-detected subclinical inflammation, and tenosynovitis in particular, has been shown predictive for RA development in patients with arthralgia. These scientific data are mostly acquired on 1.0T-1.5T MRI scanners. However, 3.0T MRI is nowadays increasingly used in practice. Evidence on the comparability of these field strengths is scarce and it has never been studied in arthralgia where subclinical inflammation is subtle. Moreover, comparisons never included tenosynovitis, which is, of all imaging features, the strongest predictor for progression to RA.Objectives:To determine if there is a difference between 1.5T and 3.0T MRI in detecting subclinical inflammation in arthralgia patients.Methods:2968 locations (joints, bones or tendon sheaths) in hands and forefeet of 28 arthralgia patients were imaged on both 1.5T and 3.0T MRI. Two independent readers scored for erosions, osteitis, synovitis (according to RAMRIS) and tenosynovitis (as described by Haavaardsholm et al.). Scores were also summed as total inflammation (osteitis, synovitis and tenosynovitis) and total RAMRIS (erosions, osteitis, synovitis and tenosynovitis) scores. Interreader reliability (comparing both readers) and field strength agreement (comparing 1.5T and 3.0T) was assessed with interclass correlation coefficients (ICCs). Next, field strength agreement was assessed after dichotomization into presence or absence of inflammation. Analyses were performed on patient- and location-level.Results:ICCs between readers were excellent (>0.90). Comparing 1.5 and 3.0T revealed excellent ICCs of 0.90 (95% confidence interval 0.78-0.95) for the total inflammation score and 0.90 (0.78-0.95) for the total RAMRIS score. ICCs for individual inflammation features were: tenosynovitis: 0.87 (0.74-0.94), synovitis 0.65 (0.24-0.84) and osteitis 0.96 (0.91-0.98). The field strength agreement on dichotomized scores was 83% for the total inflammation score and 89% for the total RAMRIS score. Of the individual features, agreement for tenosynovitis was the highest (89%). Analyses on location- level showed similar results.Conclusion:Agreement of subclinical inflammation scores on 1.5T and 3.0T were good to excellent, in particular for tenosynovitis. This suggests that scientific evidence on predictive power of MRI in arthralgia patients, obtained on 1.5T, can be generalized to 3.0T when this field strength would be used for diagnostic purposes in daily practice.Disclosure of Interests:None declared

scholarly journals Traditional Applications of Tannin Rich Extracts Supported by Scientific Data: Chemical Composition, Bioavailability and Bioaccessibility

Foods ◽  
2021 ◽  
Vol 10 (2) ◽  
pp. 251
Author(s):  
Maria Fraga-Corral ◽  
Paz Otero ◽  
Lucia Cassani ◽  
Javier Echave ◽  
Paula Garcia-Oliveira ◽  
...  
Keyword(s):  
Chemical Composition ◽  
Chemical Nature ◽  
Scientific Evidence ◽  
Scientific Data ◽  
Attractive Alternative ◽  
Chemical Profile ◽  
Traditional Use ◽  
Starting Point ◽  
Scientific Approach ◽  
Food Applications

Tannins are polyphenolic compounds historically utilized in textile and adhesive industries, but also in traditional human and animal medicines or foodstuffs. Since 20th-century, advances in analytical chemistry have allowed disclosure of the chemical nature of these molecules. The chemical profile of extracts obtained from previously selected species was investigated to try to establish a bridge between traditional background and scientific data. The study of the chemical composition of these extracts has permitted us to correlate the presence of tannins and other related molecules with the effectiveness of their apparent uses. The revision of traditional knowledge paired with scientific evidence may provide a supporting background on their use and the basis for developing innovative pharmacology and food applications based on formulations using natural sources of tannins. This traditional-scientific approach can result useful due to the raising consumers’ demand for natural products in markets, to which tannin-rich extracts may pose an attractive alternative. Therefore, it is of interest to back traditional applications with accurate data while meeting consumer’s acceptance. In this review, several species known to contain high amounts of tannins have been selected as a starting point to establish a correlation between their alleged traditional use, tannins content and composition and potential bioaccessibility.

scholarly journals How are patients with rare diseases and their carers in the UK impacted by the way care is coordinated? An exploratory qualitative interview study

2021 ◽  
Vol 16 (1) ◽  
Author(s):  
Amy Simpson ◽  
Lara Bloom ◽  
Naomi J. Fulop ◽  
Emma Hudson ◽  
Kerry Leeson-Beevers ◽  
...  
Keyword(s):  
Care Coordination ◽  
Structured Interviews ◽  
School Work ◽  
Travel Costs ◽  
Care Plans ◽  
Use Of Technology ◽  
Number Of Factors ◽  
Qualitative Interview Study ◽  
The Uk ◽  
The Impact

Abstract Background Care coordination is considered important for patients with rare conditions, yet research addressing the impact of care coordination is limited. This study aimed to explore how care coordination (or lack of) impacts on patients and carers. Semi-structured interviews were conducted with 15 patients and carers/parents in the UK, representing a range of rare conditions (including undiagnosed conditions). Transcripts were analysed thematically in an iterative process. Results Participants described a range of experiences and views in relation to care coordination. Reports of uncoordinated care emerged: appointments were uncoordinated, communication between key stakeholders was ineffective, patients and carers were required to coordinate their own care, and care was not coordinated to meet the changing needs of patients in different scenarios. As a result, participants experienced an additional burden and barriers/delays to accessing care. The impacts described by patients and carers, either attributed to or exacerbated by uncoordinated care, included: impact on physical health (including fatigue), financial impact (including loss of earnings and travel costs), and psychosocial impact (including disruption to school, work and emotional burden). Overall data highlight the importance of flexible care, which meets individual needs throughout patients’/carers’ journeys. Specifically, study participants suggested that the impacts may be addressed by: having support from a professional to coordinate care, changing the approach of clinics and appointments (where they take place, which professionals/services are available and how they are scheduled), and improving communication through the use of technology, care plans, accessible points of contact and multi-disciplinary team working. Conclusion This study provides further evidence of impacts of uncoordinated care; these may be complex and influenced by a number of factors. Approaches to coordination which improve access to care and lessen the time and burden placed on patients and carers may be particularly beneficial. Findings should influence future service developments (and the evaluation of such developments). This will be achieved, in the first instance, by informing the CONCORD Study in the UK.

scholarly journals How effective is dog culling in controlling zoonotic visceral leishmaniasis? a critical evaluation of the science, politics and ethics behind this public health policy

2011 ◽  
Vol 44 (2) ◽  
pp. 232-242 ◽  
Author(s):  
Carlos Henrique Nery Costa
Keyword(s):  
Visceral Leishmaniasis ◽  
Control Measure ◽  
Scientific Evidence ◽  
Critical Evaluation ◽  
Scientific Data ◽  
Ethical Considerations ◽  
Brazilian Government ◽  
Kala Azar ◽  
Scientific Results

INTRODUCTION: Zoonotic kala-azar, a lethal disease caused by protozoa of the genus Leishmania is considered out of control in parts of the world, particularly in Brazil, where transmission has spread to cities throughout most of the territory and mortality presents an increasing trend. Although a highly debatable measure, the Brazilian government regularly culls seropositive dogs to control the disease. Since control is failing, critical analysis concerning the actions focused on the canine reservoir was conducted. METHODS: In a review of the literature, a historical perspective focusing mainly on comparisons between the successful Chinese and Soviet strategies and the Brazilian approach is presented. In addition, analyses of the principal studies regarding the role of dogs as risk factors to humans and of the main intervention studies regarding the efficacy of the dog killing strategy were undertaken. Brazilian political reaction to a recently published systematic review that concluded that the dog culling program lacked efficiency and its effect on public policy were also reviewed. RESULTS: No firm evidence of the risk conferred by the presence of dogs to humans was verified; on the contrary, a lack of scientific support for the policy of killing dogs was confirmed. A bias for distorting scientific data towards maintaining the policy of culling animals was observed. CONCLUSIONS: Since there is no evidence that dog culling diminishes visceral leishmaniasis transmission, it should be abandoned as a control measure. Ethical considerations have been raised regarding distorting scientific results and the killing of animals despite minimal or absent scientific evidence

scholarly journals Patient factors driving overuse of cardiac catheterisation: a qualitative study with 25 participants from two German teaching practices

BMJ Open ◽  
2019 ◽  
Vol 9 (4) ◽  
pp. e024600 ◽  
Author(s):  
Anna Herwig ◽  
Dorothea Dehnen ◽  
Birgitta Weltermann
Keyword(s):  
Teaching Practices ◽  
Qualitative Content Analysis ◽  
Stable Coronary Artery Disease ◽  
Cardiac Catheterisation ◽  
Structured Interviews ◽  
Patient Factors ◽  
Qualitative Interview Study ◽  
Patient’S Experience ◽  
Artery Disease ◽  
Physician Adherence

ObjectivesPercutaneous coronary interventions do not provide a benefit over medical therapy for stable patients. However, an overuse of cardiac catheterisation (CC) for stable coronary artery disease (CAD) is documented in Germany and other countries. In this study, we aim to understand patient factors that foster this overuse.DesignOur study is an exploratory qualitative interview study with narrative, structured interviews. The interviews were analysed using qualitative content analysis by Mayring.SettingThe interviews were conducted in two German teaching practices.Participants24 interviews with 25 patients were conducted; 17 (68%) patients were male, the average age was 73.9 years (range 53–88 years). All patients suffered from CAD and had undergone at least one CC. Patients with known anxiety disorders were excluded from the study.ResultsThe analysis identified six patient factors which contributed to or prevented the overuse of CC: (1) unquestioned acceptance of prescheduled appointments for procedures/convenience; (2) disinterest in and/or lack of disease-specific knowledge; (3) helplessness in situations with varying opinions on the required care; (4) fear of another cardiac event, (5) patient–physician relationship and (6) the patient’s experience that repeat interventions did not result in a change of health status or care.ConclusionsConducted in a country with documented overuse of CC, we showed that most patients trusted their physicians’ recommendations for repeat coronary angiographies even if they were asymptomatic. Strategies to align physician adherence with guidelines and corresponding patient information are needed to prevent overuse.

Hitting the right note for child and adolescent mental and emotional wellbeing: a formative qualitative evaluation of Sistema Scotland’s “Big Noise” orchestral programme

2016 ◽  
Vol 15 (1) ◽  
pp. 25-36 ◽  
Author(s):  
Christopher Harkins ◽  
Lisa Garnham ◽  
Aileen Campbell ◽  
Carol Tannahill
Keyword(s):  
Mental Health ◽  
Mental Health Problems ◽  
Early Stage ◽  
Qualitative Evaluation ◽  
Qualitative Assessment ◽  
Potential Contribution ◽  
Emotional Wellbeing ◽  
Structured Interviews ◽  
Content Type ◽  
Causal Pathways

Purpose – Previous research emphasises the need for preventative interventions to reduce mental health problems among disadvantaged children and adolescents. There is however little consensus concerning the delivery and impacts of such interventions particularly non-clinical, arts-based models delivered within community settings. The purpose of this paper is to begin to address this deficit through a qualitative assessment of the short- to medium-term impacts to participants’ mental and emotional wellbeing within Sistema Scotland’s Big Noise orchestral programme. Design/methodology/approach – Semi-structured interviews, observation, participant drawing exercise, participatory filmmaking, focus group and analysis of programme engagement were undertaken to examine the mental and emotional wellbeing impacts of the programme which are observable at this early stage of programme delivery and participants’ lives. Findings – The qualitative findings indicate that participation in the Big Noise programme enhances participant mental and emotional wellbeing in three ways; first, the happiness and enjoyment of taking part in the programme and orchestra, particularly from music making; second, the security, belonging and relationships fostered through participation; the quality of musician/participant relationship is important here as is programme design which enables support, routine and structure; and third, increased pride, confidence and self-esteem, as a result of acquiring difficult musical skills, receiving regular praise and having frequent opportunities to demonstrate these acquired skills through regular orchestral performances. Originality/value – There is little evidence or understanding of community-based, preventative, arts interventions like Big Noise: their delivery, their life-course impacts and their potential contribution to mental health and to addressing social and health inequalities. The causal pathways in the field are under-theorised. These early findings are important as they serve as an important basis from which to consider the programme’s wider and longer term impacts, which will be assessed through an on-going longitudinal, mixed method summative evaluation.

An exploratory study of health scientists’ data reuse behaviors

2017 ◽  
Vol 69 (4) ◽  
pp. 389-407 ◽  
Author(s):  
Soohyung Joo ◽  
Sujin Kim ◽  
Youngseek Kim
Keyword(s):  
Organizational Support ◽  
Exploratory Study ◽  
Scientific Data ◽  
Perceived Usefulness ◽  
Data Reuse ◽  
Health Science ◽  
Equation Modeling ◽  
Survey Method ◽  
Research Model ◽  
Content Type

Purpose The purpose of this paper is to examine how health scientists’ attitudinal, social, and resource factors affect their data reuse behaviors. Design/methodology/approach A survey method was utilized to investigate to what extent attitudinal, social, and resource factors influence health scientists’ data reuse behaviors. The health scientists’ data reuse research model was validated by using partial least squares (PLS) based structural equation modeling technique with a total of 161 health scientists in the USA. Findings The analysis results showed that health scientists’ data reuse intentions are driven by attitude toward data reuse, community norm of data reuse, disciplinary research climate, and organizational support factors. This research also found that both perceived usefulness of data reuse and perceived concern involved in data reuse have significant influences on health scientists’ attitude toward data reuse. Research limitations/implications This research evaluated its newly proposed research model based on the theory of planned behavior using a sample from the community of scientists’ scholar database. This research showed an overall picture of how attitudinal, social, and resource factors influence health scientists’ data reuse behaviors. This research is limited due to its sample size and low response rate, so this study is considered as an exploratory study rather than a confirmatory study. Practical implications This research suggested for health science research communities, academic institutions, and libraries that diverse strategies need to be utilized to promote health scientists’ data reuse behaviors. Originality/value This research is one of initial studies in scientific data reuse which provided a holistic map about health scientists’ data sharing behaviors. The findings of this study provide the groundwork for strategies to facilitate data reuse practice in health science areas.

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