Researchers and clinicians seek to improve outcomes for patients with and at risk for lymphedema (LE), a chronic, progressive disease of the lymphatic system, often starting with seemingly innocuous superficial swelling of a limb which progresses to a distressing, disabling condition. LE can be life-threatening when infection in LE-affected areas becomes systemic. The toll that inadequately-managed lymphedema takes on individuals'quality of life and the financial impact on the health care delivery system is considerable. Therefore, to evaluate appropriate health care services for patients with all forms of lymphedema and advance the quality of lymphedema care, the American Lymphedema Framework Project (ALFP) launched a national collaborative initiative under the leadership of recognized clinical experts and investigators in the field of lymphedema. However, there is no cyber framework to share findings and knowledge between researchers and practitioners, or to bring the latest findings to patients and other stakeholders. To tackle this challenging issue, our objective for this proposal is to develop cyber informatics tools for the lymphedema stakeholders. The overall goal of this project is to provide an operational cyber infrastructure that collects, organizes, and disseminates up-to-date LE information. This development proposal has three major aims:
Aim 1 : Develop a cyber framework for inter-institutional lymphedema research activities;
Aim 2 : Integrate informatics tools to provide an on-line summary of concurrent LE studies;
and Aim 3 : Create a web portal for lymphedema stakeholders with user-specific query methods Our development plan includes eight development modules for this project: 1) Building a data warehouse for a minimum data set and data governance protocols for cross-institutional studies, 2) Developing survey and analysis tools for each stakeholder group, 3) Computationally collecting high-quality and evidence-based knowledge from a selected set of LE organizations, journals, and news releases from reputable public media, 4) Constructing an informatics tools library for mining structured and unstructured information sources, performing statistical tests, and creating graphics/figures for information visualization, 5) Building a case-based library for complex case repository and exchange within and across stakeholder groups, 6) Building a knowledge base for indexing discovered patterns from all information sources and linking it with the best practice guidelines, 7) Developing user-centered query methods dedicated for patients/families, health professionals, health educators, and researchers, 8) Monitoring the proposed work by quantitatively and qualitatively measuring the improvement of research/clinical outcomes and LE awareness.

Public Health Relevance

of this Research to Public Health Research in the field of lymphedema (a chronic progressive condition with protein-rich swelling which often becomes distressing and disabling) has been limited and fragmented, with findings not always broadly disseminated or aggregated to collectively provide evidence-based expert knowledge, in part due to absence of a cyber framework to share findings and knowledge between researchers and practitioners, let alone bring the latest findings to patients. Progress in moving the field of lymphology forward toward uniform Best Practice standards and improved communication among clinical and research sites across the country is severely hampered by the lack of: uniform measurement protocols, diagnostic criteria, and existence of a common data set. This proposed development project will address these needs through the design, development, testing, and implementation of the lymphedema cyber informatics system which will provide the foundation for this much-needed minimum data set and effective communication of data, findings, protocols, and criteria leading to increased lymphedema awareness and improved care. .

National Institute of Health (NIH)
National Library of Medicine (NLM)
Resources Project Grant (NLM) (G08)
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Special Emphasis Panel (ZLM1-AP-G (J2))
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Sim, Hua-Chuan
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University of Missouri-Columbia
Schools of Engineering
United States
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Green, Jason M; Paladugu, Sowjanya; Shuyu, Xu et al. (2013) Using temporal mining to examine the development of lymphedema in breast cancer survivors. Nurs Res 62:122-9