The RUDY study: using digital technologies to enable a research partnership.
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ABSTRACT:
SUBMITTER: Teare HJA
PROVIDER: S-EPMC5520069 | biostudies-other | 2017 Jun
REPOSITORIES: biostudies-other
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Project description:Digital technologies, especially if used in novel ways, provide a number of potential advantages to clinical research in trials related to human immunodeficiency virus (HIV) and acquired immune deficiency syndrome (AIDS) and may greatly facilitate operations as well as data collection and analysis. These technologies may even allow answering questions that are not answerable with older technologies. However, they come with a variety of potential concerns for both the participants and the trial sponsors. The exact challenges and means for alleviation depend on the technology and on the population in which it is deployed, and the rapidly changing landscape of digital technologies presents a challenge for creating future-proof guidelines for technology application.The aim of this study was to identify and summarize some common themes that are frequently encountered by researchers in this context and highlight those that should be carefully considered before making a decision to include these technologies in their research.In April 2016, the Global HIV Vaccine Enterprise surveyed the field for research groups with recent experience in novel applications of digital technologies in HIV clinical research and convened these groups for a 1-day meeting. Real-world uses of various technologies were presented and discussed by 46 attendees, most of whom were researchers involved in the design and conduct of clinical trials of biomedical HIV prevention and treatment approaches. After the meeting, a small group of organizers reviewed the presentations and feedback obtained during the meeting and categorized various lessons-learned to identify common themes. A group of 9 experts developed a draft summary of the findings that was circulated via email to all 46 attendees for review. Taking into account the feedback received, the group finalized the considerations that are presented here.Meeting presenters and attendees discussed the many successful applications of digital technologies to improve research outcomes, such as those for recruitment and enrollment, participant identification, informed consent, data collection, data quality, and protocol or treatment adherence. These discussions also revealed unintended consequence of technology usage, including risks to study participants and risks to study integrity.Key lessons learned from these discussions included the need to thoroughly evaluate systems to be used, the idea that early success may not be sustained throughout the study, that some failures will occur, and considerations for study-provided devices. Additionally, taking these key lessons into account, the group generated recommendations on how to move forward with the use of technology in HIV vaccine and biomedical prevention trials.
| S-EPMC5556256 | biostudies-other
Project description:Digital health technologies (smartphones, smartwatches, and other body-worn sensors) can act as novel tools to aid in the diagnosis and remote objective monitoring of an individual's disease symptoms, both in clinical care and in research. Nonetheless, such digital health technologies have yet to widely demonstrate value in clinical research due to insufficient data interpretability and lack of regulatory acceptance. Metadata, i.e., data that accompany and describe the primary data, can be utilized to better understand the context of the sensor data and can assist in data management, data sharing, and subsequent data analysis. The need for data and metadata standards for digital health technologies has been raised in academic and industry research communities and has also been noted by regulatory authorities. Therefore, to address this unmet need, we here propose a metadata set that reflects regulatory guidelines and that can serve as a conceptual map to (1) inform researchers on the metadata they should collect in digital health studies, aiming to increase the interpretability and exchangeability of their data, and (2) direct standard development organizations on how to extend their existing standards to incorporate digital health technologies. The proposed metadata set is informed by existing standards pertaining to clinical trials and medical devices, in addition to existing schemas that have supported digital health technology studies. We illustrate this specifically in the context of Parkinson's disease, as a model for a wide range of other chronic conditions for which remote monitoring would be useful in both care and science. We invite the scientific and clinical research communities to apply the proposed metadata set to ongoing and planned research. Where the proposed metadata fall short, we ask users to contribute to its ongoing revision so that an adequate degree of consensus can be maintained in a rapidly evolving technology landscape.
| S-EPMC7046173 | biostudies-literature
Project description:Background There are increasing expectations for researchers and knowledge users in the health system to use a research partnership approach, such as integrated knowledge translation, to increase the relevance and use of research findings in health practice, programmes and policies. However, little is known about how health research trainees engage in research partnership approaches such as IKT. In response, the purpose of this scoping review was to map and characterize the evidence related to using an IKT or other research partnership approach from the perspective of health research trainees in thesis and/or postdoctoral work. Methods We conducted this scoping review following the Joanna Briggs Institute methodology and Arksey and O’Malley’s framework. We searched the following databases in June 2020: MEDLINE, Embase, CINAHL and PsycINFO. We also searched sources of unpublished studies and grey literature. We reported our findings in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews. Results We included 74 records that described trainees’ experiences using an IKT or other research partnership approach to health research. The majority of studies involved collaboration with knowledge users in the research question development, recruitment and data collection stages of the research process. Intersecting barriers to IKT or other research partnerships at the individual, interpersonal and organizational levels were reported, including lack of skills in partnership research, competing priorities and trainees’ “outsider” status. We also identified studies that evaluated their IKT approach and reported impacts on partnership formation, such as valuing different perspectives, and enhanced relevance of research. Conclusion Our review provides insights for trainees interested in IKT or other research partnership approaches and offers guidance on how to apply an IKT approach to their research. The review findings can serve as a basis for future reviews and primary research focused on IKT principles, strategies and evaluation. The findings can also inform IKT training efforts such as guideline development and academic programme development. Supplementary Information The online version contains supplementary material available at 10.1186/s12961-021-00784-0.
| S-EPMC8561363 | biostudies-literature
Project description:IntroductionCollaborative research approaches, such as co-production, co-design, engaged scholarship and integrated knowledge translation (IKT), aim to bridge the evidence to practice and policy gap. There are multiple benefits of collaborative research approaches, but studies report many challenges with establishing and maintaining research partnerships. Researchers often do not have the opportunity to learn how to build collaborative relationships, and most graduate students do not receive formal training in research partnerships. We are unlikely to make meaningful progress in strengthening graduate and postgraduate training on working collaboratively with the health system until we have a better understanding of how students are currently engaging in research partnership approaches. In response, this scoping review aims to map and characterise the evidence related to using an IKT or other research partnership approach from the perspective of health research trainees.Methods and analysisWe will employ methods described by the Joanna Briggs Institute and Arksey and O'Malley's framework for conducting scoping reviews. The reporting will follow the Preferred Reporting Items for Systematic Reviews and Meta-Analysis extension for scoping reviews checklist. We will include both published and unpublished grey literature and search the following databases: MEDLINE, Embase, CINAHL, PsycINFO, ProQuest Dissertations & Theses Global databases, Google Scholar and websites from professional bodies and other organisations. Two reviewers will independently screen the articles and extract data using a standardised data collection form. We will narratively describe quantitative data and conduct a thematic analysis of qualitative data. We will map the IKT and other research partnership activities onto the Knowledge to Action cycle and IAP2 Levels of Engagement Framework.Ethics and disseminationNo ethical approval is required for this study. We will share the results in a peer-reviewed, open access publication, conference presentation and stakeholder communications.
| S-EPMC8154946 | biostudies-literature
Project description:Sleep is investigated in many different ways, many different species and under many different circumstances. Modern sleep research is a multidisciplinary venture. Therefore, this review cannot give a complete overview of all techniques used in sleep research and sleep medicine. What it will try to do is to give an overview of widely applied techniques and exciting new developments. Electroencephalography has been the backbone of sleep research and sleep medicine since its first application in the 1930s. The electroencephalogram is still used but now combined with many different techniques monitoring body and brain temperature, changes in brain and blood chemistry, or changes in brain functioning. Animal research has been very important for progress in sleep research and sleep medicine. It provides opportunities to investigate the sleeping brain in ways not possible in healthy volunteers. Progress in genomics has brought new insights in sleep regulation, the best example being the discovery of hypocretin/orexin deficiency as the cause of narcolepsy. Gene manipulation holds great promise for the future since it is possible not only to investigate the functions of different genes under normal conditions, but also to mimic human pathology in much greater detail.
| S-EPMC2771137 | biostudies-other
Project description:Beginning early in life, sleep health, including adequate quality, quantity, and consistent sleep routines, is critical to growth and development, behavior, and mental and physical health. Children who live in economically stressed urban environments are at particular risk for sleep deficiency and its negative consequences. Although efficacious sleep health interventions are available, few address the context of economically stressed urban environments. The purpose of this paper is to describe a two-phase protocol for an ongoing NIH/NINR-funded community-engaged study designed to understand the perspectives of parents, community child care and pediatric health care providers about sleep habits, factors that contribute to sleep and sleep habits, sleep difficulty, and potentially useful sleep promotion strategies among children living in economically stressed urban environments. The social-ecological model guides this study. Phase I employs a convergent mixed-methods design, in which we are conducting semi-structured interviews with parents, childcare providers, and primary health care providers. We are collecting 9 days of objective sleep data (wrist actigraphy) from children who are 6-18 months (n?=?15) and 19-36 months of age (n?=?15) and parent reports of sleep and sleep-related factors using standard questionnaires. In Phase I, we will use a qualitative descriptive approach to analyze the interview data, and descriptive statistics to analyze the survey and actigraph data. In Phase II, we will use the information to develop a contextually relevant program to promote sleep health. Our long-term goal is to improve sleep health and sleep-related outcomes in these children.
| S-EPMC5780228 | biostudies-literature
Project description:Driven by data proliferation, digital technologies have transformed the marketing landscape. In parallel, significant privacy concerns have shaken consumer-firm relationships, prompting changes in both regulatory interventions and people's own privacy-protective behaviors. With a comprehensive analysis of digital technologies and data strategy informed by structuration theory and privacy literature, the authors consider privacy tensions as the product of firm-consumer interactions, facilitated by digital technologies. This perspective in turn implies distinct consumer, regulatory, and firm responses related to data protection. By consolidating various perspectives, the authors propose three tenets and seven propositions, supported by interview insights from senior managers and consumer informants, that create a foundation for understanding the digital technology implications for firm performance in contexts marked by growing privacy worries and legal ramifications. On the basis of this conceptual framework, they also propose a data strategy typology across two main strategic functions of digital technologies: data monetization and data sharing. The result is four distinct types of firms, which engage in disparate behaviors in the broader ecosystem pertaining to privacy issues. This article also provides directions for research, according to a synthesis of findings from both academic and practical perspectives.
| S-EPMC8897618 | biostudies-literature
Project description:The digital traces that we leave online are increasingly fruitful sources of data for social scientists, including those interested in demographic research. The collection and use of digital data also presents numerous statistical, computational, and ethical challenges, motivating the development of new research approaches to address these burgeoning issues. In this article, we argue that researchers with formal training in demography-those who have a history of developing innovative approaches to using challenging data-are well positioned to contribute to this area of work. We discuss the benefits and challenges of using digital trace data for social and demographic research, and we review examples of current demographic literature that creatively use digital trace data to study processes related to fertility, mortality, and migration. Focusing on Facebook data for advertisers-a novel "digital census" that has largely been untapped by demographers-we provide illustrative and empirical examples of how demographic researchers can manage issues such as bias and representation when using digital trace data. We conclude by offering our perspective on the road ahead regarding demography and its role in the data revolution.
| S-EPMC6292527 | biostudies-other
Project description:BACKGROUND:A range of digital technologies are available to lay people to find, share, and generate health-related information. Few studies have directed attention specifically to how women are using these technologies from the diverse array available to them. Even fewer have focused on Australian women's use of digital health. OBJECTIVE:The Australian Women and Digital Health Project aimed to investigate which types of digital technologies women used regularly for health-related purposes and which they found most helpful and useful. Qualitative methods-semistructured interviews and focus groups-were employed to shed light on the situated complexities of the participants' enactments of digital health technologies. The project adopted a feminist new materialism theoretical perspective, focusing on the affordances, relational connections, and affective forces that came together to open up or close off the agential capacities generated with and through these enactments. METHODS:The project comprised two separate studies including a total of 66 women. In study 1, 36 women living in the city of Canberra took part in face-to-face interviews and focus groups, while study 2 involved telephone interviews with 30 women from other areas of Australia. RESULTS:The affordances of search engines to locate health information and websites and social media platforms for providing information and peer support were highly used and valued. Affective forces such as the desire for trust, motivation, empowerment, reassurance, control, care, and connection emerged in the participants' accounts. Agential capacities generated with and through digital health technologies included the capacity to seek and generate information and create a better sense of knowledge and expertise about bodies, illness, and health care, including the women's own bodies and health, that of their families and friends, and that of their often anonymous online social networks. The participants referred time and again to appreciating the feelings of agency and control that using digital health technologies afforded them. When the technologies failed to work as expected, these agential capacities were not realized. Women responded with feelings of frustration, disappointment, and annoyance, leading them to become disenchanted with the possibilities of the digital technologies they had tried. CONCLUSIONS:The findings demonstrate the nuanced and complex ways in which the participants were engaging with and contributing to online sources of information and using these sources together with face-to-face encounters with doctors and other health care professionals and friends and family members. They highlight the lay forms of expertise that the women had developed in finding, assessing, and creating health knowledges. The study also emphasized the key role that many women play in providing advice and health care for family members not only as digitally engaged patients but also as digitally engaged carers.
| S-EPMC6367665 | biostudies-literature
Project description:This paper examines the impact of widespread adoption of information and communication technologies (ICT) on urban structure worldwide. Has it offset agglomeration benefits and led to more dispersed spatial structures, or has it strengthened urban externalities and thus resulted in more concentrated spatial structures? Theoretical and empirical studies on this question have produced contradictory findings. The present study recognizes that assumptions made earlier about the evolution of technological capabilities do not necessarily hold today. As cutting-edge digital technologies have matured considerably, a fresh look at this question is called for. The paper addresses this issue by means of several data sets using instrumental variable methods. One is the UN data on Urban Settlements with more than 300, 000 inhabitants. Estimation methods with these data show that increased adoption of ICT has resulted in national urban systems that are less uniform in terms of city sizes and are characterized by higher population concentrations in larger cities, when concentration is proxied the Pareto (Zipf) coefficient for national city size distributions. Two, is disaggregated data for the urban systems of the US, defined as Micropolitan and Metropolitan Areas, and for the UK, defined as Built-up Areas in England and Wales, respectively. These data allow for the impacts to be studied for cities smaller than those included in the cross-country data. Increased internet usage improved a city's ranking in the US urban system. Similarly, increased download speed improves a built-up area's ranking in England and Wales.
| S-EPMC8049296 | biostudies-literature