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.
Background The efforts to contain SARS-CoV-2 and reduce the impact of the COVID-19 pandemic have been supported by Test, Trace and Isolate (TTI) systems in many settings, including the United Kingdom. Mathematical models of transmission and TTI interventions, used to inform design and policy choices, make assumptions about the public’s behaviour in the context of a rapidly unfolding and changeable emergency. This study investigates public perceptions and interactions with UK TTI policy in July 2021, assesses them against how TTI processes are conceptualised and represented in models, and then interprets the findings with modellers who have been contributing evidence to TTI policy. Methods 20 members of the public recruited via social media were interviewed for one hour about their perceptions and interactions with the UK TTI system. Thematic analysis identified key themes, which were then presented back to a workshop of pandemic infectious disease modellers who assessed these findings against assumptions made in TTI intervention modelling. Workshop members co-drafted this report. Results Themes included education about SARS-CoV-2, perceived risks, trust, mental health and practical concerns. Findings covered testing practices, including the uses of and trust in different types of testing, and the challenges of testing and isolating faced by different demographic groups. This information was judged as consequential to the modelling process, from guiding the selection of research questions, influencing choice of model structure, informing parameter ranges and validating or challenging assumptions, to highlighting where model assumptions are reasonable or where their poor reflection of practice might lead to uninformative results. Conclusions We conclude that deeper engagement with members of the public should be integrated at regular stages of public health intervention modelling.
Virtual Reality Therapy (VRT) has been shown to be effective in treating anxiety disorders and phobias, but has not yet been widely tested for Substance Use Disorders (SUDs) and it is not known whether health care practitioners working with SUDs would use VRT if it were available. We report the results of an interview study exploring practitioners’ and researchers’ views on the utility of VRT for SUD treatment. Practitioners and researchers with at least two years’ experience delivering or researching and designing SUD treatments were recruited (n = 14). Interviews were thematically analyzed, resulting in themes relating to the safety and realism of VRT, and the opportunity for the additional insight it could offer to during SUD treatment. Participants were positive about employing VRT as an additional treatment for SUD. VRT was thought suitable for treating adults and people with mental health issues or trauma, provided that risks were appropriately managed. Subsequent relapse, trauma and over-confidence in the success of treatment were identified as risks. The opportunity VRT offered to include other actors in therapy (via avatar use), and observe reactions, were benefits that could not currently be achieved with other forms of therapy. Overall, VRT was thought to offer the potential for safe, realistic, personalized and insightful exposure to diverse triggering scenarios, and to be acceptable for integration into a wide range of SUD treatments.
The efforts to contain SARS-CoV-2 and reduce the impact of COVID-19 have been supported by Test, Trace and Isolate (TTI) systems in many settings, including the United Kingdom. The mathematical models underlying policy decisions about TTI make assumptions about behaviour in the context of a rapidly unfolding and changeable emergency. This study investigates the reported behaviours of UK citizens in July 2021, assesses them against how a set of TTI processes are conceptualised and represented in models and then interprets the findings with modellers who have been contributing evidence to TTI policy. We report on testing practices, including the uses of and trust in different types of testing, and the challenges of testing and isolating faced by different demographic groups. The study demonstrates the potential of input from members of the public to benefit the modelling process, from guiding the choice of research questions, influencing choice of model structure, informing parameter ranges and validating or challenging assumptions, to highlighting where model assumptions are reasonable or where their poor reflection of practice might lead to uninformative results. We conclude that deeper engagement with members of the public should be integrated at regular stages of public health intervention modelling.
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