Digital Research Platform Research Articles

RSpace + iRODS

Research infrastructures enabling scalable sharing of data are proliferating, at the institutional, project/consortium and national/international levels. Many of these are domain-specific, but there also is a growing focus on Research Commons that enable general data sharing across domains. Examples include the EUDAT Collaborative Data Infrastructure in Europe, the Gakunin RDM platform in Japan, and the Research Commons planned by Canada’s Digital Research Alliance (DRA). In some cases, such as Gakunin RDM, Research Commons are architected as an integrated set of complementary services, but in most existing and planned Research Commons a disparate set of unconnected services is offered. This paper describes the integration between RSpace, an active content management digital research platform, and iRODS, a policy-driven data management platform, and explains how it is designed to serve as a flexible connecting component that ties together other services that make up a Research Commons. The paper discusses how, by tying together otherwise unconnected services, inclusion of RSpace + iRODS in Research Commons enables streamlined flows of data and metadata between services, enhancing FAIR principles. This will be illustrated by considering inclusion of RSpace + iRODS in the two specific examples of Canada’s proposed Research Commons and the EUDAT Collaborative Data Infrastructure. In both cases the interaction between RSpace, iRODS, and individual services provided by the Commons will be discussed, and a comparison will be made between the two Commons and the benefits derived from the inclusion of RSpace + iRODS.

Assessment of Adherence to Treatment with Ethylmethylhydroxypyridine Malate in Patients with Chronic Cerebral Ischemia Using a Digital Platform

Background. The problem of adherence to medical recommendations is always relevant. Low adherence or nonadherence to treatment has negative clinical and economic effects, such as influence on treatment success, prolongation of disease duration, increased risk of hospitalization, negative outcomes, and increased mortality risk.
 The aim of this study was to assess the impact of using the RX Observatory digital platform on adherence to treatment with Etoxydol (ethylmethylhydroxypyridine malate) in patients with chronic cerebral ischemia (CCI). 
 Materials and methods. Medication adherence was studied in patients with CCI who visited doctors in three Moscow city polyclinics using the RX Observatory digital research platform and digital questionnaires.
 Results. The study found that 47% of patients fully adhered to the prescribed medication. Adherence was higher if the medication was prescribed by a medical specialist (general practitioner – 36 %, neurologist – 56 %), although adherence to medical recommendations was higher among patients visiting general practitioners (general practitioner – 48 %, neurologist – 43 %).
 Conclusions. The study showed that the RX Observatory platform may be a useful tool for developing medication adherence in patients taking Etoxydol (ethylmethylhydroxypyridine malate).

我國國別區域研究路徑發展微探——以德國「海德堡跨文化中心」建設為例

Through the analysis of the construction of the Heidelberg Center for Transcultural Studies of Heidelberg University, this paper investigates how this innovative collaborative research institute assembles different faculties as well as international scholars and students from different disciplines and promotes interdisciplinary cooperation and further development of “interdisciplinary clusters” within universities on the micro-level, the experience of HCTS was introduced in terms of diversified international enrollment models, scholar teams of diversified academic backgrounds and multi/interdisciplinary course structures, the creation of interdisciplinary “academic communities”, overseas research and the construction of its funding guarantee system and digital research platform. This paper aims to provide a reference for the development path of “Country and Areas Studies” in China.

Patient Onboarding and Engagement to Build a Digital Study After Enrollment in a Clinical Trial (TAILOR-PCI Digital Study): Intervention Study.

BackgroundThe Tailored Antiplatelet Initiation to Lessen Outcomes Due to Decreased Clopidogrel Response After Percutaneous Coronary Intervention (TAILOR-PCI) Digital Study is a novel proof-of-concept study that evaluated the feasibility of extending the TAILOR-PCI randomized controlled trial (RCT) follow-up period by using a remote digital platform.ObjectiveThe aim of this study is to describe patients’ onboarding, engagement, and results in a digital study after enrollment in an RCT.MethodsIn this intervention study, previously enrolled TAILOR-PCI patients in the United States and Canada within 24 months of randomization were invited by letter to download the study app. Those who did not respond to the letter were contacted by phone to survey the reasons for nonparticipation. A direct-to-patient digital research platform (the Eureka Research Platform) was used to onboard patients, obtain consent, and administer activities in the digital study. The patients were asked to complete health-related surveys and digitally provide follow-up data. Our primary end points were the consent rate, the duration of participation, and the monthly activity completion rate in the digital study. The hypothesis being tested was formulated before data collection began.ResultsAfter the parent trial was completed, letters were mailed to 907 eligible patients (representing 18.8% [907/4837] of total enrolled in the RCT) within 15.6 (SD 5.2) months of randomization across 24 sites. Among the 907 patients invited, 290 (32%) visited the study website and 110 (12.1%) consented—40.9% (45/110) after the letter, 33.6% (37/110) after the first phone call, and 25.5% (28/110) after the second call. Among the 47.4% (409/862) of patients who responded, 41.8% (171/409) declined to participate because of a lack of time, 31.2% (128/409) declined because of the lack of a smartphone, and 11.5% (47/409) declined because of difficulty understanding what was expected of them in the study. Patients who consented were older (aged 65.3 vs 62.5 years; P=.006) and had a lower prevalence of diabetes (19% vs 30%; P=.02) or tobacco use (6.4% vs 24.8%; P<.001). A greater proportion had bachelor’s degrees (47.2% vs 25.7%; P<.001) and were more computer literate (90.5% vs 62.3% of daily internet use; P<.001) than those who did not consent. The average completion rate of the 920 available monthly electronic visits was 64.9% (SD 7.6%); there was no decrease in this rate throughout the study duration.ConclusionsExtended follow-up after enrollment in an RCT by using a digital study was technically feasible but was limited because of the inability to contact most eligible patients or a lack of time or access to a smartphone. Among the enrolled patients, most completed the required electronic visits. Enhanced recruitment methods, such as the introduction of a digital study at the time of RCT consent, smartphone provision, and robust study support for onboarding, should be explored further.Trial RegistrationClinicaltrails.gov NCT01742117; https://clinicaltrials.gov/ct2/show/NCT01742117

Transitioning a randomized controlled trial to a digital registry – experience from the TAILOR-PCI digital follow-up study on onboarding, engagement and geofencing consent rate

Abstract Background/Introduction TAILOR-PCI is the largest cardiovascular genotype-based randomized trial (NCT#01742117) investigating whether genotype-guided selection of oral P2Y12 inhibitor therapy improves ischemic outcomes after percutaneous coronary intervention (PCI). The TAILOR-PCI Digital Sub-Study tests the feasibility of extending original follow-up of 1 year to 2 years using state-of-the-art digital solutions. Deep phenotyping acquired during a clinical trial can be leveraged by extending follow-up in an efficient and cost-effective manner using digital technology. Purpose Our objective is to describe onboarding and engagement of participants initially recruited in a large, pragmatic, international, multi-center clinical trial to a digital registry. Methods TAILOR-PCI participants, within 23 months of their index PCI, were invited by letters containing a URL to the Digital Sub-Study website (http://tailorpci.eurekaplatform.org). These invitations were followed by phone calls, if no response to the letter, to determine reason for non-participation. A NIH-funded direct-to-participant digital research platform (the Eureka Research Platform) was used to onboard, consent and enroll participants for the digital follow-up. Participants were asked to answer health-related surveys at fixed intervals using the Eureka mobile app and desktop platform. To capture hospitalizations, participants could enable geofencing to allow background location tracking, which triggered surveys if a hospitalization was detected. Result(s) Letters were mailed to 893 of 929 eligible participants across 22 sites in the United States and Canada leading to 226 homepage visits and 118 registrations. There were 107 consents (12.0% of invited; mean age: 66.4±9.0; 19 females [18%]): 47 (44%) participants consented after the letter, 36 (34%) consented after the 1st call and 24 (22%) consented after a 2nd call. Among those who consented, 100 were eligible (7 did not have a smartphone) 81 downloaded the study mobile app and 73 agreed for geofencing (Figure 1). Among the 722 invited participants who were surveyed, 354 declined participation: due to lack of time (146; 20.2%), lack of smartphone (125; 17.3%), difficulty understanding (41; 5.7%), concern about using smartphone (34; 4.7%), concern of data privacy (14; 1.9%), concerns of location tracking (6; 0.8%) and other reasons (57; 7.9%). Conclusion Extended follow-up of a clinical trial using a digital platform is feasible but uptake in this study population was limited largely due to lack of time or a smartphone among participants. Based on data from other digital studies, uptake may also have been limited since digital follow-up consent was not incorporated at the time of consent for the main trial. Figure 1. Onboarding of the digital substudy Funding Acknowledgement Type of funding source: Public grant(s) – National budget only. Main funding source(s): National Institute of Health (NIH), National Heart, Lung, and Blood Institute (NHLBI)

Rationale and design of the TAILOR-PCI digital study: Transitioning a randomized controlled trial to a digital registry

BackgroundTailored Antiplatelet Initiation to Lessen Outcomes Due to Decreased Clopidogrel Response after Percutaneous Coronary Intervention (TAILOR-PCI) is the largest cardiovascular genotype-based randomized pragmatic trial (NCT#01742117) to evaluate the role of genotype-guided selection of oral P2Y12 inhibitor therapy in improving ischemic outcomes after PCI. The trial has been extended from the original 12- to 24-month follow-up, using study coordinator-initiated telephone visits. TAILOR-PCI Digital Study tests the feasibility of extending the trial follow-up in a subset of patients for up to 24 months using state-of-the-art digital solutions. The rationale, design, and approach of extended digital study of patients recruited into a large, international, multi-center clinical trial has not been previously described.MethodsA total of 930 patients from U.S. and Canadian sites previously enrolled in the 5,302 patient TAILOR-PCI trial within 23 months of randomization are invited by mail to the Digital Study website (http://tailorpci.eurekaplatform.org) and by up to 2 recruiting telephone calls. Eureka, a direct-to-participant digital research platform, is used to consent and collect prospective data on patients for the digital study. Patients are asked to answer health-related surveys at fixed intervals using the Eureka mobile app and or desktop platform. The likelihood of patients enrolled in a randomized clinical trial transitioning to a registry using digital technology, the reasons for nonparticipation and engagement rates are evaluated. To capture hospitalizations, patients may optionally enable geofencing, a process that allows background location tracking and triggering of surveys if a hospital visit greater than 4 hours is detected. In addition, patients answer digital hospitalization surveys every month. Hospitalization data received from the Digital Study will be compared to data collected from study coordinator telephone visits during the same time frame.ConclusionsThe TAILOR-PCI Digital Study evaluates the feasibility of transitioning a large multicenter randomized clinical trial to a digital registry. The study could provide evidence for the ability of digital technology to follow clinical trial patients and to ascertain trial-related events thus also building the foundation for conducting digital clinical trials. Such a digital approach may be especially pertinent in the era of COVID-19.

A digital health research platform for community engagement, recruitment, and retention of sexual and gender minority adults in a national longitudinal cohort study--The PRIDE Study.

Sexual and gender minority (SGM) people are underrepresented in research. We sought to create a digital research platform to engage, recruit, and retain SGM people in a national, longitudinal, dynamic, cohort study (The PRIDE Study) of SGM health. We partnered with design and development firms and engaged SGM community members to build a secure, cloud-based, containerized, microservices-based, feature-rich, research platform. We created PRIDEnet, a national network of individuals and organizations that actively engaged SGM communities in all stages of health research. The PRIDE Study participants were recruited via in-person outreach, communications to PRIDEnet constituents, social media advertising, and word-of-mouth. Participants completed surveys to report demographic as well as physical, mental, and social health data. We built a secure digital research platform with engaging functionality that engaged SGM people and recruited and retained 13731 diverse individuals in 2 years. A sizeable sample of 3813 gender minority people (32.8% of cohort) were recruited despite representing only approximately 0.6% of the population. Participants engaged with the platform and completed comprehensive annual surveys- including questions about sensitive and stigmatizing topics- to create a data resource and join a cohort for ongoing SGM health research. With an appealing digital platform, recruitment and engagement in online-only longitudinal cohort studies are possible. Participant engagement with meaningful, bidirectional relationships creates stakeholders and enables study cocreation. Research about effective tactics to engage, recruit, and maintain active participation from all communities is needed. This digital research platform successfully recruited and engaged diverse SGM participants in The PRIDE Study. A similar approach may be successful in partnership with other underrepresented and vulnerable populations.

Titelei

We’ve built this digital research platform to provide academics everywhere with fast, stable and secure digital access to our library of over 110,000 scholarly books and 800,000 journal articles. We’ve tested the platform in close cooperation with leading academic institutions. If you have any questions or you notice something doesn’t quite work as it should, please visit our <a href="/publishing/faq?lang=en" class="text-primary">Help/FAQ</a> page and let us know.

Inhalt

We’ve built this digital research platform to provide academics everywhere with fast, stable and secure digital access to our library of over 110,000 scholarly books and 800,000 journal articles. We’ve tested the platform in close cooperation with leading academic institutions. If you have any questions or you notice something doesn’t quite work as it should, please visit our <a href="/publishing/faq?lang=en" class="text-primary">Help/FAQ</a> page and let us know.

Inhalt

We’ve built this digital research platform to provide academics everywhere with fast, stable and secure digital access to our library of over 110,000 scholarly books and 800,000 journal articles. We’ve tested the platform in close cooperation with leading academic institutions. If you have any questions or you notice something doesn’t quite work as it should, please visit our <a href="/publishing/faq?lang=en" class="text-primary">Help/FAQ</a> page and let us know.

Inhalt

We’ve built this digital research platform to provide academics everywhere with fast, stable and secure digital access to our library of over 110,000 scholarly books and 800,000 journal articles. We’ve tested the platform in close cooperation with leading academic institutions. If you have any questions or you notice something doesn’t quite work as it should, please visit our <a href="/publishing/faq?lang=en" class="text-primary">Help/FAQ</a> page and let us know.

Temporality and Innovation in Digital Humanities: The Case of Papyri from Tebtunis

Temporal aspects of Design Thinking (DT) innovation processes have not yet received enough attention. This paper discusses their importance in complex design situations involving non-collocated, multi-disciplinary design teams. We focus on three aspects: 1) awareness of temporal trajectories in the process and how to bring continuity to an otherwise fragmented workflow, 2) temporality of learning through such processes and 3) discussing opportunities for DT concerning temporal aspects of the process. As a research case, we use a project from digital humanities that aims to develop an innovative proposal for Virtual Tebtunis, a digital research platform enabling effective cooperation across organizations in possession of papyri and other articles from the ancient city of Tebtunis. Four workshops were organized in three locations, with varied groups of participants to carry out the Design Thinking process. The timeline of orientation, incorporation, and identification phases was used as an initial time framework. In the aftermath of the project, we were able to identify a richer framework for engaging with temporal aspects of DT processes.

Inhalt

We’ve built this digital research platform to provide academics everywhere with fast, stable and secure digital access to our library of over 110,000 scholarly books and 800,000 journal articles. We’ve tested the platform in close cooperation with leading academic institutions. If you have any questions or you notice something doesn’t quite work as it should, please visit our <a href="/publishing/faq?lang=en" class="text-primary">Help/FAQ</a> page and let us know.

Titelei

We’ve built this digital research platform to provide academics everywhere with fast, stable and secure digital access to our library of over 110,000 scholarly books and 800,000 journal articles. We’ve tested the platform in close cooperation with leading academic institutions. If you have any questions or you notice something doesn’t quite work as it should, please visit our <a href="/publishing/faq?lang=en" class="text-primary">Help/FAQ</a> page and let us know.

Titelei

We’ve built this digital research platform to provide academics everywhere with fast, stable and secure digital access to our library of over 110,000 scholarly books and 800,000 journal articles. We’ve tested the platform in close cooperation with leading academic institutions. If you have any questions or you notice something doesn’t quite work as it should, please visit our <a href="/publishing/faq?lang=en" class="text-primary">Help/FAQ</a> page and let us know.

Eingegangene Bücher und Druckschriften

We’ve built this digital research platform to provide academics everywhere with fast, stable and secure digital access to our library of over 110,000 scholarly books and 800,000 journal articles. We’ve tested the platform in close cooperation with leading academic institutions. If you have any questions or you notice something doesn’t quite work as it should, please visit our <a href="/publishing/faq?lang=en" class="text-primary">Help/FAQ</a> page and let us know.

Christoph Lundgreen, Regelkonflikte in der römischen Republik

We’ve built this digital research platform to provide academics everywhere with fast, stable and secure digital access to our library of over 110,000 scholarly books and 800,000 journal articles. We’ve tested the platform in close cooperation with leading academic institutions. If you have any questions or you notice something doesn’t quite work as it should, please visit our <a href="/publishing/faq?lang=en" class="text-primary">Help/FAQ</a> page and let us know.

Introducción Violencia física, religión e Iglesia

We’ve built this digital research platform to provide academics everywhere with fast, stable and secure digital access to our library of over 110,000 scholarly books and 800,000 journal articles. We’ve tested the platform in close cooperation with leading academic institutions. If you have any questions or you notice something doesn’t quite work as it should, please visit our <a href="/publishing/faq?lang=en" class="text-primary">Help/FAQ</a> page and let us know.

Martin SIGMUND: Komponieren für Events. Zur Rolle der Künste in der Eventkultur

We’ve built this digital research platform to provide academics everywhere with fast, stable and secure digital access to our library of over 110,000 scholarly books and 800,000 journal articles. We’ve tested the platform in close cooperation with leading academic institutions. If you have any questions or you notice something doesn’t quite work as it should, please visit our <a href="/publishing/faq?lang=en" class="text-primary">Help/FAQ</a> page and let us know.

Eingelangte Schriften und Neuerscheinungen

We’ve built this digital research platform to provide academics everywhere with fast, stable and secure digital access to our library of over 110,000 scholarly books and 800,000 journal articles. We’ve tested the platform in close cooperation with leading academic institutions. If you have any questions or you notice something doesn’t quite work as it should, please visit our <a href="/publishing/faq?lang=en" class="text-primary">Help/FAQ</a> page and let us know.