Dataset Information

A Federated Online Search Tool for Biospecimens (Sample Locator): Usability Study.

ABSTRACT: BACKGROUND:The German Biobank Alliance (GBA) aims to establish a cross-site biobank network. For this endeavor, the so-called Sample Locator, a federated search tool for biospecimens and related data, has been developed, forming the heart of its information technology (IT) infrastructure. OBJECTIVE:To ensure the sustainable use of such a tool, we included researchers as participants in an end user-based usability evaluation. METHODS:To develop a prototype ready for evaluation, we needed input from GBA IT experts. Thus, we conducted a 2-day workshop with 8 GBA IT team members. The focus was on the respective steps of a user-centered design process. With the acquired knowledge, the participants designed low-fidelity mock-ups. The main ideas of these mock-ups were discussed, extracted, and summarized into a comprehensive prototype using Microsoft PowerPoint. Furthermore, we created a questionnaire concerning the usability of the prototype, including the System Usability Scale (SUS), questions on negative and positive aspects, and typical tasks to be fulfilled with the tool. Subsequently, the prototype was pretested on the basis of this questionnaire with researchers who have a biobank background. Based on this preliminary work, the usability analysis was ultimately carried out with researchers and the results were evaluated. RESULTS:Altogether, 27 researchers familiar with sample requests evaluated the prototype. The analysis of the feedback certified a good usability, given that the Sample Locator prototype was seen as intuitive and user-friendly by 74% (20/27) of the participants. The total SUS score by the 25 persons that completed the questionnaire was 80.4, indicating good system usability. Still, the evaluation provided useful advice on optimization potential (eg, offering a help function). CONCLUSIONS:The findings of this usability analysis indicate that the considerations regarding a user-friendly application that have been made in the development process so far strongly coincide with the perception of the study participants. Nevertheless, it was important to engage prospective end users to ensure that the previous development is going in the desired direction and that the Sample Locator will be used in the future. The user comments and suggestions for improvement will be considered in upcoming iterations for refinement.

SUBMITTER: Schuttler C

PROVIDER: S-EPMC7463387 | biostudies-literature | 2020 Aug

REPOSITORIES: biostudies-literature

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A Federated Online Search Tool for Biospecimens (Sample Locator): Usability Study.

Schüttler Christina C Huth Verena V von Jagwitz-Biegnitz Magdaléna M Lablans Martin M Prokosch Hans-Ulrich HU Griebel Lena L

Journal of medical Internet research 20200818 8

<h4>Background</h4>The German Biobank Alliance (GBA) aims to establish a cross-site biobank network. For this endeavor, the so-called Sample Locator, a federated search tool for biospecimens and related data, has been developed, forming the heart of its information technology (IT) infrastructure.<h4>Objective</h4>To ensure the sustainable use of such a tool, we included researchers as participants in an end user-based usability evaluation.<h4>Methods</h4>To develop a prototype ready for evaluati ...[more]

PMID: 32663150

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Project description:BackgroundMedication is the most common intervention in health care, and the number of online consumer information systems within the pharmaceutical sector is increasing. However, online consumer information systems can be a barrier for users, imposing information asymmetries between stakeholders.ObjectiveThe objective of this study was to quantify and compare the usability of an online consumer medication information system (OCMIS) against a reference implementation based on an interoperable information model for patients, physicians, and pharmacists.MethodsQuantitative and qualitative data were acquired from patients, physicians, and pharmacists in this online usability study. We administered 3 use cases and a post hoc questionnaire per user. Quantitative usability data including effectiveness (task success), efficiency (task time), and user satisfaction (system usability scale [SUS]) was complemented by qualitative and demographic data. Users evaluated 6 existing systems and 1 reference implementation of an OCMIS.ResultsA total of 137 patients, 81 physicians, and 68 pharmacists participated in this study. Task success varied from 84% to 92% in patients, 66% to 100% in physicians, and 50% to 91% in pharmacists. Task completion time decreased over the course of the study for all but 2 OCMIS within the patient group. Due to an assumed nonnormal distribution of SUS scores, within-group comparison was done using the Kruskal-Wallis test. Patients showed differences in SUS scores (P=.02) and task time (P=.03), while physicians did not have significant differences in SUS scores (P=.83) and task time (P=.72). For pharmacists, a significant difference in SUS scores (P<.001) and task time (P=.007) was detected.ConclusionsThe vendor-neutral reference implementation based on an interoperable information model was proven to be a promising approach that was not inferior to existing solutions for patients and physicians. For pharmacists, it exceeded user satisfaction scores compared to other OCMIS. This data-driven approach based on an interoperable information model enables the development of more user-tailored features to increase usability. This fosters data democratization and empowers stakeholders within the pharmaceutical sector.

Project description:BackgroundThe integrity and reliability of clinical research outcomes rely heavily on access to vast amounts of data. However, the fragmented distribution of these data across multiple institutions, along with ethical and regulatory barriers, presents significant challenges to accessing relevant data. While federated learning offers a promising solution to leverage insights from fragmented data sets, its adoption faces hurdles due to implementation complexities, scalability issues, and inclusivity challenges.ObjectiveThis paper introduces Federated Learning for Everyone (FL4E), an accessible framework facilitating multistakeholder collaboration in clinical research. It focuses on simplifying federated learning through an innovative ecosystem-based approach.MethodsThe "degree of federation" is a fundamental concept of FL4E, allowing for flexible integration of federated and centralized learning models. This feature provides a customizable solution by enabling users to choose the level of data decentralization based on specific health care settings or project needs, making federated learning more adaptable and efficient. By using an ecosystem-based collaborative learning strategy, FL4E encourages a comprehensive platform for managing real-world data, enhancing collaboration and knowledge sharing among its stakeholders.ResultsEvaluating FL4E's effectiveness using real-world health care data sets has highlighted its ecosystem-oriented and inclusive design. By applying hybrid models to 2 distinct analytical tasks-classification and survival analysis-within real-world settings, we have effectively measured the "degree of federation" across various contexts. These evaluations show that FL4E's hybrid models not only match the performance of fully federated models but also avoid the substantial overhead usually linked with these models. Achieving this balance greatly enhances collaborative initiatives and broadens the scope of analytical possibilities within the ecosystem.ConclusionsFL4E represents a significant step forward in collaborative clinical research by merging the benefits of centralized and federated learning. Its modular ecosystem-based design and the "degree of federation" feature make it an inclusive, customizable framework suitable for a wide array of clinical research scenarios, promising to revolutionize the field through improved collaboration and data use. Detailed implementation and analyses are available on the associated GitHub repository.

Project description:BackgroundImproving cancer survival in the UK, despite recent significant gains, remains a huge challenge. This can be attributed to, at least in part, patient and diagnostic delays, when patients are unaware they are suffering from a cancerous symptom and therefore do not visit a general practitioner promptly and/or when general practitioners fail to investigate the symptom or refer promptly. To raise awareness of symptoms that may potentially be indicative of underlying cancer among members of the public a symptom-based risk assessment model (developed for medical practitioner use and currently only used by some UK general practitioners) was utilized to develop a risk assessment tool to be offered to the public in community settings. Such a tool could help individuals recognize a symptom, which may potentially indicate cancer, faster and reduce the time taken to visit to their general practitioner. In this paper we report results about the design and development of the REACT (Risk Estimation for Additional Cancer Testing) website, a tool to be used in a community setting allowing users to complete an online questionnaire and obtain personalized cancer symptom-based risk estimation.ObjectiveThe objectives of this study are to evaluate (1) the acceptability of REACT among the public and health care practitioners, (2) the usability of the REACT website, (3) the presentation of personalized cancer risk on the website, and (4) potential approaches to adopt REACT into community health care services in the UK.MethodsOur research consisted of multiple stages involving members of the public (n=39) and health care practitioners (n=20) in the UK. Data were collected between June 2017 and January 2018. User views were collected by (1) the "think-aloud" approach when participants using the website were asked to talk about their perceptions and feelings in relation to the website, and (2) self-reporting of website experiences through open-ended questionnaires. Data collection and data analysis continued simultaneously, allowing for website iterations between different points of data collection.ResultsThe results demonstrate the need for such a tool. Participants suggest the best way to offer REACT is through a guided approach, with a health care practitioner (eg, pharmacist or National Health Service Health Check nurse) present during the process of risk evaluation. User feedback, which was generally consistent across members of public and health care practitioners, has been used to inform the development of the website. The most important aspects were: simplicity, ability to evaluate multiple cancers, content emphasizing an inviting community "feel," use (when possible) of layperson language in the symptom screening questionnaire, and a robust and positive approach to cancer communication relying on visual risk representation both with affected individuals and the entire population at risk.ConclusionsThis study illustrates the benefits of involving public and stakeholders in developing and implementing a simple cancer symptom check tool within community. It also offers insights and design suggestions for user-friendly interfaces of similar health care Web-based services, especially those involving personalized risk estimation.

Project description:BackgroundThe internet is commonly used by older adults to obtain health information and this trend has markedly increased in the past decade. However, studies illustrate that much of the available online health information is not informed by good quality evidence, developed in a transparent way, or easy to use. Furthermore, studies highlight that the general public lacks the skills necessary to distinguish between online products that are credible and trustworthy and those that are not. A number of tools have been developed to assess the evidence, transparency, and usability of online health information; however, many have not been assessed for reliability or ease of use.ObjectiveThe first objective of this study was to determine if a tool assessing the evidence, transparency, and usability of online health information exists that is easy and quick to use and has good reliability. No such tool was identified, so the second objective was to develop such a tool and assess it for reliability when used to assess online health information on topics of relevant to optimal aging.MethodsAn electronic database search was conducted between 2002 and 2012 to identify published papers describing tools that assessed the evidence, transparency, and usability of online health information. Papers were retained if the tool described was assessed for reliability, assessed the quality of evidence used to create online health information, and was quick and easy to use. When no one tool met expectations, a new instrument was developed and tested for reliability. Reliability between two raters was assessed using the intraclass correlation coefficient (ICC) for each item at two time points. SPSS Statistics 22 software was used for statistical analyses and a one-way random effects model was used to report the results. The overall ICC was assessed for the instrument as a whole in July 2015. The threshold for retaining items was ICC>0.60 (ie, "good" reliability).ResultsAll tools identified that evaluated online health information were either too complex, took a long time to complete, had poor reliability, or had not undergone reliability assessment. A new instrument was developed and assessed for reliability in April 2014. Three items had an ICC<0.60 (ie, "good" reliability). One of these items was removed ("minimal scrolling") and two were retained but reworded for clarity. Four new items were added that assessed the level of research evidence that informed the online health information and the tool was retested in July 2015. The total ICC score showed excellent agreement with both single measures (ICC=0.988; CI 0.982-0.992) and average measures (ICC=0.994; CI 0.991-0.996).ConclusionsThe results of this study suggest that this new tool is reliable for assessing the evidence, transparency, and usability of online health information that is relevant to optimal aging.

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Dataset Information

A Federated Online Search Tool for Biospecimens (Sample Locator): Usability Study.

Publications

A Federated Online Search Tool for Biospecimens (Sample Locator): Usability Study.

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