Dataset Information

Developing an Intranet-Based Lymphedema Dashboard for Breast Cancer Multidisciplinary Teams: Design Research Study.

ABSTRACT: BACKGROUND:A large quantity of data is collected during the delivery of cancer care. However, once collected, these data are difficult for health professionals to access to support clinical decision making and performance review. There is a need for innovative tools that make clinical data more accessible to support health professionals in these activities. One approach for providing health professionals with access to clinical data is to create the infrastructure and interface for a clinical dashboard to make data accessible in a timely and relevant manner. OBJECTIVE:This study aimed to develop and evaluate 2 prototype dashboards for displaying data on the identification and management of lymphedema. METHODS:The study used a co-design framework to develop 2 prototype dashboards for use by health professionals delivering breast cancer care. The key feature of these dashboards was an approach for visualizing lymphedema patient cohort and individual patient data. This project began with 2 focus group sessions conducted with members of a breast cancer multidisciplinary team (n=33) and a breast cancer consumer (n=1) to establish clinically relevant and appropriate data for presentation and the visualization requirements for a dashboard. A series of fortnightly meetings over 6 months with an Advisory Committee (n=10) occurred to inform and refine the development of a static mock-up dashboard. This mock-up was then presented to representatives of the multidisciplinary team (n=3) to get preliminary feedback about the design and use of such dashboards. Feedback from these presentations was reviewed and used to inform the development of the interactive prototypes. A structured evaluation was conducted on the prototypes, using Think Aloud Protocol and semistructured interviews with representatives of the multidisciplinary team (n=5). RESULTS:Lymphedema was selected as a clinically relevant area for the prototype dashboards. A qualitative evaluation is reported for 5 health professionals. These participants were selected from 3 specialties: surgery (n=1), radiation oncology (n=2), and occupational therapy (n=2). Participants were able to complete the majority of tasks on the dashboard. Semistructured interview themes were categorized into engagement or enthusiasm for the dashboard, user experience, and data quality and completeness. CONCLUSIONS:Findings from this study constitute the first report of a co-design process for creating a lymphedema dashboard for breast cancer health professionals. Health professionals are interested in the use of data visualization tools to make routinely collected clinical data more accessible. To be used effectively, dashboards need to be reliable and sourced from accurate and comprehensive data sets. While the co-design process used to develop the visualization tool proved effective for designing an individual patient dashboard, the complexity and accessibility of the data required for a cohort dashboard remained a challenge.

SUBMITTER: Janssen A

PROVIDER: S-EPMC7201315 | biostudies-literature | 2020 Apr

REPOSITORIES: biostudies-literature

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Developing an Intranet-Based Lymphedema Dashboard for Breast Cancer Multidisciplinary Teams: Design Research Study.

Janssen Anna A Donnelly Candice C Kay Judy J Thiem Peter P Saavedra Aldo A Pathmanathan Nirmala N Elder Elisabeth E Dinh Phuong P Kabir Masrura M Jackson Kirsten K Harnett Paul P Shaw Tim T

Journal of medical Internet research 20200421 4

<h4>Background</h4>A large quantity of data is collected during the delivery of cancer care. However, once collected, these data are difficult for health professionals to access to support clinical decision making and performance review. There is a need for innovative tools that make clinical data more accessible to support health professionals in these activities. One approach for providing health professionals with access to clinical data is to create the infrastructure and interface for a cli ...[more]

PMID: 32314968

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Project description:BACKGROUND:Personal narratives have been seen as a useful way of communicating about cancer treatment options and providing recovery information. Many printed versions of such material are available, including comics that explore the individual memories of patients who have gone through cancer treatment. These studies have been used to orientate patients, patients' relatives, and physicians. However, only a few Web-based comics have been specifically designed for patients with breast cancer and used as aids to decision making. OBJECTIVE:We aimed to describe the developmental process of creating an animated comic as a Web-based surgery decision-making tool; the comic was aimed at illustrating the feelings, thoughts, and meanings when a patient suffers from breast cancer. This was done by recounting the symptoms, diagnostic process, treatments, and treatment effects of such women from the diagnosis stage onward. METHODS:Using cycles of planning, action, evaluation, and reflection, which involved collaborative work, action research was conducted to develop a Web-based animated comic. The stages of action research consisted of (1) semistructured and in-depth interviews to collect experiences of women with breast cancer; (2) construction of an animated comic by editors, graphics designers, dubbers, and information technology engineers; (3) redrawing of pictures of the comic after gathering feedback from a breast surgeon; and (4) evaluation of the Web-based animated comic using 6 patient focus groups. RESULTS:The comic was produced and showcased on the website "The Network of Making-decision Aids for Breast Cancer Surgery"; the comic was accompanied by soft music and audio explanations. The comic functions as a personal statement that describes experiencing breast cancer. The animated comic consists of 8 chapters, based on the 8 themes deducted from the findings obtained during the analysis of relevant interviews. The 8 chapters include (1) the appearance of a lump; (2) confirmation by medical diagnosis; (3) the uncertainty of waiting (4) fear of life-threatening disease; (5) choosing life over despair; (6) being brave and deciding to undergo treatment; (7) choosing the type of surgery; and (8) being reborn. CONCLUSIONS:Using action research, this study illustrated that the comic that sheds light on issues of feelings, emotions, and thoughts that are present when a woman is diagnosed with breast cancer and provides a communication medium to explain the steps in the process. Meanwhile, it implies that hope will be able to overcome the challenges that will be faced. Within the Web-based decision aid for patients with breast cancer, the animated comic acts as an information resource and is aimed at patients' understanding of impacts of emotions arising when suffering from breast cancer. It is potentially applicable as a therapeutic tool that facilitates self-reflection and self-healing among newly diagnosed patients with breast cancer.

Project description:BackgroundTumor boards constitute the main consensus and clinical decision-making body of multidisciplinary teams (MDTs) in cancer care. With the increasing clinical complexity of treatment options (eg, targeted therapies, multimodal treatments) and the progressive incorporation of new areas of intervention (eg, survivorship care), tumor boards are now required to play a central role in all cancer processes. However, although frameworks are in place to evaluate MDT quality, only few web-based tools are available for this purpose; indeed, no web-based MDT evaluation tools have been developed for or adapted to the Spanish National Health System.ObjectiveThe first aim of this study was to develop a web-based self-assessment model (Autoevaluación de Equipos Multidisciplinares de Atención al Cáncer [AEMAC]) for evaluating multidisciplinary cancer teams in Spain and the second aim was to validate this tool by testing its metric properties, acceptability, and usability.MethodsWe designed and validated the AEMAC program in 3 stages. In the first stage (research), we reviewed the available scientific evidence and performed a qualitative case study of good practice in multidisciplinary care within the Spanish National Health System (n=4 centers and 28 health care professionals). The results were used to define the thematic areas and quality criteria for the self-evaluation model, which were then discussed and validated by a group of experts. The second stage (development) involved the technological development of a web app that would be accessible from any mobile device. In the third stage (piloting and validation), we conducted 4 pilot tests (n=15 tumor boards, 243 professionals) and used the results to analyze the acceptability and usefulness of the tool.ResultsWe designed a self-assessment model based on 5 thematic areas encompassing a total of 25 quality components, which users rated on a 3-option development scale. The evaluation process, which was managed entirely from the web app, consisted of individual self-assessment, group prioritization, and creation of an improvement plan. Cronbach alpha (.86), McDonald's omega (0.88), and various fit indices (comparative fit index between 0.95 and 1 and goodness-of-fit index between 0.97 and 0.99 for all 5 aspects) confirmed internal consistency. The mean rating for overall satisfaction with the tool and for consistency between the content of the tool and the reality of tumor boards was 7.6 out of 10.ConclusionsThe results obtained during the period of research and piloting of the AEMAC program showed that it has an appropriate structure and metric properties and could therefore be implemented in a real context and generalized to other hospitals. As a virtual tool, it helps to measure the key aspects of MDT quality, such as effectiveness of collaboration and communication, leadership, and the organizational environment.

Dataset Information

Developing an Intranet-Based Lymphedema Dashboard for Breast Cancer Multidisciplinary Teams: Design Research Study.

Publications

Developing an Intranet-Based Lymphedema Dashboard for Breast Cancer Multidisciplinary Teams: Design Research Study.

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