- Email: [email protected]
Health Cyberinfrastructure for Collaborative Use-Inspired Research and Practice
Health Cyberinfrastructure for Collaborative Use-Inspired Research and Practice William Chismar, PhD, Thomas A. Horan, PhD, Bradford W. Hesse, PhD, Sue S. Feldman, RN, MEd, Abdul R. Shaikh, PhD, MHSc Abstract: Rapid advances in information and networking technologies have greatly expanded the modes for conducting business and science. For the past two decades, the National Science Foundation (NSF) has been supporting efforts to develop a comprehensive cyberinfrastructure with the goal of transforming the nature of scientifıc investigations. More recently, the NIH began supporting efforts to develop a cyberinfrastructure of healthcare research and practice. However, the best structure and applications of cyberinfrastructure in health care have yet to be defıned. To address these issues, the NIH and the Kay Center for E-Health Research at Claremont Graduate University sponsored a symposium on “Cyberinfrastructure for Public Health and Health Services: Research and Funding Directions.” The symposium convened researchers, practitioners, and federal funders to discuss how to further cyberinfrastructure systems and research in the public health and health services sectors. This paper synthesizes fındings of the symposium, the goals of which were to determine the dynamics necessary for executing and utilizing cyberinfrastructure in public health and health services; examine the requirements of transdisciplinary collaboration; and identify future research directions. A multi-faceted conception of use-inspired research for cyberinfrastructure is developed. Use-inspired research aims to further basic theory but is grounded, inspired, and informed by practical problems. A cyberinfrastructure framework is presented that incorporates three intersecting dimensions: research–practice, health services–public health, and social–technical dimensions. Within this framework, this paper discusses the ways in which cyberinfrastructure provides opportunities to integrate across these dimensions to develop research and actions that can improve both clinical outcomes and public health. (Am J Prev Med 2011;40(5S2):S108 –S114) © 2011 American Journal of Preventive Medicine
Introduction
C
yberinfrastructure constitutes both the technical and social backbone of modern science, research, and related practice. As defıned by the “Report of the National Science Foundation Blue-Ribbon Advisory Panel on Cyberinfrastructure,”1 it includes computational advancements and broadband networking, massive storage and managed information, observation and measurement tools, leadership on shared standards, middleware, and common applications for scientifıc computation. It also focuses on the potential of sharing From the Shidler College of Business and Outreach College (Chismar), University of Hawaii at Ma noa, Honolulu, Hawaii; Kay Center of E-Health Research (Horan, Feldman), Claremont Graduate University, Claremont, California; and the Health Communication and Informatics Research Branch (Hesse, Shaikh), National Cancer Institute, NIH, Bethesda, Maryland Address correspondence to: Sue S. Feldman, RN, MEd, Kay Center for E-Health Research, Claremont Graduate University, 130 East Ninth Street, Claremont CA 91711. E-mail: [email protected]. 0749-3797/$17.00 doi: 10.1016/j.amepre.2011.01.002
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and increasing the available capabilities across the science and engineering research communities, as well as facilitating new applications, collaboration, and interoperability across institutions and disciplines. In public health and health services, cyberinfrastructure has the potential for developing systems that will enable new connections among public health and health services. Public health encompasses surveillance, detection, intervention, and related analyses to improve the health of populations, while health services generally focuses on prevention, treatment, and care activities to improve individual health outcomes. Public health informatics and medical informatics both use information technology (IT) to improve health and health outcomes. However, public health informatics focuses more on improving public health and disease surveillance and prevention, whereas medical informatics focuses more on organizing data for analysis and then providing tools to assist with that analysis. It is typically applied to relationships between technology and medical care.2,3 © 2011 American Journal of Preventive Medicine. All rights reserved.
Chismar et al / Am J Prev Med 2011;40(5S2):S108 –S114
While public and medical informatics have traditionally had different foci, recent developments have highlighted the synergistic possibilities from interwoven initiatives.4 For example, Infection Watch Live (www.kflainfectionwatch. com) is a web-based geospatial application that maps illnesses as reported in emergency departments in Ontario, Canada. Real-time maps provide health providers, school offıcials, and consumers with useful surveillance information to help prevent the spread of disease, provide early detection, anticipate treatment and care, and improve health outcomes. The current and prospective growth of public health and medical informatics applications raises the need for cyberinfrastructure that can manage diverse facets of this burgeoning health-related data spectrum, including production, storage, integration, access, analysis, and retrieval of myriad health data. An important factor underlying this growth is recent federal policies aimed at accelerating health information technology (HIT) utilization. In particular, the Health Information Technology for Economic and Clinical Health (HITECH) Act of 2009 has provided a set of incentives for HIT implication, including provisions to encourage meaningful use of HIT throughout the healthcare industry (healthit.hhs.gov/ portal/server.pt/community/healthit_hhs_gov__home/ 1204). The recently enacted Open Government Directive provides additional guidance for federal agencies to furnish federal data sets, including public health data, for use in health research and practice (www.whitehouse.gov/ open). The emerging need for cyberinfrastructure considerations for public health and health services motivated the authors to organize a symposium entitled “Cyberinfrastructure for Public Health and Health Services” that brought together a diverse group of people from the public and private sectors, including researchers, practitioners, and federal funders. This paper reports on key fındings from this symposium, which was held on January 5, 2009, at the 42nd Annual Hawai‘i International Conference on System Sciences (www.hicss.hawaii.edu/ hicss_42/swt/swt-cph.htm). The symposium had the following objectives: ●
identify the key factors and processes needed for effective utilization of cyberinfrastructure nationally in public health and health services; ● examine the dynamics of transdisciplinary collaboration across stakeholders; ● develop future directions for cyberinfrastructure research in public health and health services. The fırst objective was established to illuminate the benefıcial impacts and challenges of cyberinfrastructure for public health and health services. Challenges to obMay 2011
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taining positive benefıts arise from the gap between health care for individuals and populations, from the difference between who pays for cyberinfrastructure and who receives its benefıts, and from diffıculties in effectively translating research fındings into practice. Symposium discussions focused on using cyberinfrastructure to bridge the gap between public health and individual health services, obtain public health understanding and benefıts from electronic and personal health records (EHRs and PHRs), and realize the opportunities in public health surveillance and health communication. The second objective was pursued to better understand the collaborative processes that are inherent in cyberinfrastructure. Specifıcally examined was the need for a transdisciplinary approach among public health and health services stakeholders and disciplines.5 Stokols describes transdisciplinary research as a “process in which team members representing different fıelds work together over extended periods to develop shared conceptual and methodologic frameworks that not only integrate but also transcend their respective disciplinary perspectives.”6 Inclusive stakeholder groups can form connections between public health and health services by using cyberinfrastructure in accessing individual- and population-level data for public use, developing innovative lines of research, improving practice, acquiring funding, and translating and disseminating fındings. The third objective was established to investigate areas of research and new collaborations that would help realize the full potential of HIT for transforming public health and health services. Specifıcally examined was the need to reengineer the vertical structures now holding scientifıc and medical information to permit collaborative research across disciplines. The symposium examined how cyberinfrastructure can enable interoperability that serves to link existing islands of surveillance data, research and clinical data, and even personal health data maintained by consumers. Regarding research recommendations, the symposium addressed data sharing, computational methods, and interoperability across existing and future systems, for example, the National Cancer Institute’s (NCI) Cancer Biomedical Informatics Grid (caBIG) (https://cabig.nci. nih.gov/), the DHHS Nationwide Health Information Network(NHIN)(www.hhs.gov/healthit/healthnetwork/ background/), and EHR/PHR systems, as well as partnerships across diverse public health and health services entities. Using existing data models, researchers, practitioners, and funders can focus on integration, interoperability, and development of innovative funding opportunities in the context of EHRs and PHRs.
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Figure 1. Pasteur’s Quadrant, showing how the basic confluence of scientific inquiry with applied research results in innovations and a practical understanding that addresses societal needs8
Organizing Framework for Cyberinfrastructure in Public Health and Health Services A major goal of NSF in funding cyberinfrastructure projects is to enable distributed knowledge communities that collaborate and communicate across disciplines, distances, and cultures.7 Research on cyberinfrastructure within the science community has progressed rapidly. Within the specifıc domain of health care and public health, there is a need to accelerate the research cycle to increase collaboration among researchers and practitioners. To facilitate effective research, stakeholders need to determine how they can best collaborate to advance the development and deployment of cyberinfrastructure in public health programs and health services. One potentially benefıcial approach to facilitate collaborative research is “use-inspired research.” Research can be categorized by two extremes: pure basic research (the search for fundamental understanding and principles) and pure applied research (the search for solutions to immediate, practical problems). An alternative to these two extremes is a “Pasteur’s Quadrant” style of research, which is a marriage between theory and practical applications.8 In this research style, theory is grounded, inspired, and informed by practical problems and challenges (Figure 1). Rather than being driven solely by interesting issues, research in this Pasteur’s Quadrant is driven by the desire to address specifıc societal needs— thus the term “use-inspired research”—and fosters an environment linking scientifıc fındings and social value. Cyberinfrastructure provides an avenue for transforming the activities of disparate groups involved in conversations about major public health challenges, such as
health reform, health disparities, and cancer prevention and control. The challenge is to enable and optimize organizations to carry out these activities more effectively, on a larger scale, and with broader participation and transdisciplinarity. A functionally complete “collaboratory” that removes silo infrastructure will help shape the system into a comprehensive cyberinfrastructure. In asking how cyberinfrastructure can best be utilized for public health and health services, collaborative research teams must be cognizant of the social and technical nexus that informs cyberinfrastructure, and work together to initiate use-inspired systems research focused on specifıc health topics. Based on the symposium panels and discussions, the authors suggest three dimensions that constitute the core dynamics of cyberinfrastructure for public health and health services: ● ● ●
technical and social domains; public health and health service domains; health research and practice domains.
These dimensions represent a hybrid of several operative concepts. The technical and social domains provide the foundations for cyberinfrastructure-enabled collaboration, centered on technical instantiations, but done within the context of societal (including organizational) dynamics. The public health and individual health services domains and the research and practice domains provide dimensions across which cyberinfrastructure can enable collaborations. The focus of use-inspired cyberinfrastructure is to fınd permutations and combinations of these factors that create cyberinfrastructure systems that are effective in improving public health and health services. Figure 2 shows the domains and dimensions.
Figure 2. Major dimensions of cyberinfrastructure for public health and health services www.ajpm-online.net
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Such a conceptualization draws from and extends traditional notions of cyberinfrastructure. From the perspective of advancing computational science, NSF and others have recognized that cyberinfrastructure technical advances need to be considered within the sociotechnical content in which it is occurring.9 The potential positive impacts of the technology of cyberinfrastructure can be realized only through behavioral changes that are part of the social aspects of cyberinfrastructure. The development of cyberinfrastructure must be done within the social context of how consumers and health professionals behave, interact with each other, and do their jobs. More specifıcally, the design and use of cyberinfrastructure must enable personal and process changes in behavior at the organizational and interorganizational levels. For example, PHRs can enable a basic change in the collection and utilization of health information and, if integrated into a more comprehensive infrastructure, have the potential to lead to better health outcomes. However, to achieve maximum impact, the behavior of individuals must change, as well as the processes in healthcare delivery. Continuing with the public health– health services dimension, one challenge for researchers is to understand how cyberinfrastructure can help integrate the public health and health services domains. This dimension builds on related work that outlines how cyberinfrastructure can provide a useful bridge connecting health services and population data– centric interests.10 Cyberinfrastructure provides access to information by improving consumer–provider communication, consumer education, and the ability of clinical and public health professionals to reach diverse populations. These capabilities can enhance community health by developing targeted community health profıles, improving public health planning, and enhancing local public health communication and partnerships. For example, de-identifıed data from emergency departments can play a critical role in communicating public health messages and response strategies, as they did during the 2007 San Diego CA wildfıres, which led to the largest evacuation in California history. The public surveillance system datareporting took place via the CDC’s BioSense system from six of San Diego’s 19 hospitals; data were also gathered from 413 emergency departments around the U.S. These data were used to alert public health offıcials to emerging disease trends specifıc to this disaster (respiratory and gastrointestinal) and facilitated post-disaster health surveillance.11 The research–practice dimension holds numerous research opportunities for public health and health services practice. This dimension builds on recent interest to leverage information systems development for both research and practice use.12 Such opportunities range from May 2011
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data mining to knowledge management, and engaging research endeavors to influence population-level public health outcomes. This opportunity is illustrated in the area of tobacco control research in which there is an extensive but widely dispersed research history of scholarship.13 The NCI’s PopSciGrid Consumer Health Data Portal is an evolving platform that demonstrates how disparate health-related data can be integrated, visualized, and communicated using cyberinfrastructure to potentially empower communities and support new avenues of research and policy for cancer prevention and control (logd.tw.rpi.edu/project/popscigrid). The PopSciGrid Portal is designed to explore three innovative goals: (1) to convey complex, health-related information to consumer and public-health decision makers for community health impact; (2) to leverage the growing evidence base for communicating health information on the Internet; and (3) to inform the development of future research opportunities effectively utilizing cyberinfrastructure for cancer prevention and control. Using publicly available data from the CDC and NIH, the portal addresses the White House Open Government Directive and DHHS’ Community Health Data Initiative’s mandate to increase public access to data. The portal enables users to explore state and national trends related to smoking prevalence, cigarette taxes, and smokefree policies, and it can be scalable to incorporate other public health domains.
Dynamics of Transdisciplinary Collaboration Research addressing cyberinfrastructure for public health and health services should be driven by a collaborative approach to promote transdisciplinary and integrative sciences. Such research endeavors require high-performance collaboration environments, not just computation environments. Increasing the intellectual cross-section of distributed knowledge communities will increase the likelihood of transformative results by leveraging existing knowledge through data sharing, and through creating incentives that encourage individuals and organizations to share data with the broader community. To better understand the dynamics of transdisciplinary collaboration, it is useful to look at the three dimensions described in the proposed framework above: technical–social, public health– health services and research–practice.
Social–Technical Collaboration Focused on Consumers Returning to the central concept of use-inspired research, cyberinfrastructure in public health and health services requires principles that can be usefully organized around patient/consumer-centered care and delivering value to
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consumers. This health value to the consumer can be the societal need on which use-inspired research should focus. Use-inspired research would draw on collaboration from multiple disciplines to develop cyberinfrastructure and then use this cyberinfrastructure as a platform for improving focused research that enhances the consumer and patient component to public health and health services. Knowledge of human behavior is essential to improving health outcomes. Scientists already have the beginnings of sociobehavioral genomics, which explores associations between behavioral characteristics and genetics, and applies those understandings to the population as a whole, spawning the emerging fıeld of populomics.14 These insights should be expanded to implications for drug development, behavioral sensitizing, and transdisciplinary integrated science—with its potential for redesigning the public health system from its current reactionary form to one that is proactive and preventive. Technologies are not solely a mechanism for delivering interventions, but can be agents of intervention. Cyberinfrastructure offers opportunities to help extend consumer participation in health services to both uninsured and underinsured groups that have a disproportionate share of chronic health conditions.15 One recent example is the use of a personal health application used in underserved settings made possible by recent cloud architecture developments.16 This challenge of broadening health access and use reaches across organizations, people, and communication, providing a critical opportunity to advance ways of thinking about technology and to develop an information integration, access, and use strategy for a broader array of consumers.
Collaboration would involve research communities who listen to the needs and capabilities of various public health and health services entities to fınd research and practice informatics approaches to vexing health problems. Symposium participants provided numerous examples of existing structures within public health systems and health services, discussing their advantages and disadvantages and how they can be improved and replicated. They focused on how cyberinfrastructure could improve the integration of EHRs/PHRs, data accuracy, surveillance systems, and clinical trials. However, many practitioner institutions are reluctant to promote data sharing; thus, new incentive structures and a reorientation of the value proposition of data sharing must be developed. Process improvements from the use of cyberinfrastructure are labor intensive and thus require cooperation and collaboration on individual and community systems levels. Public health agencies share a similar need for standardized methodologies for data collection, as well as for collaborative information sharing across regions. The NCI’s Cancer Research Network (CRN) (crn. cancer.gov) is an example of such use-inspired research. Cancer, the leading cause of death for people aged 45– 64 years,17 carries an enormous fınancial cost. A 2006 study found that a 1% reduction in cancer incidence would represent over $400 billion in healthcare savings.18 Through the 14 HMOs that make up the CRN, the NCI has addressed a public health issue of daunting proportions by increasing the number of screenings and taking a proactive approach to prevention within real-world clinical settings. Indeed, the CRN could become a remarkable social and technical infrastructure that improves health quality and effectiveness as well as reducing costs.
Public Health and Health Services Collaborations
Research–Practice Collaborations
Bringing together a variety of stakeholders can potentially build bridges across the public health and health services orientations, which as noted above tend to focus on either population-level efforts (public health) or clinical-level analysis (health services). In light of the inherent overlap between these two foci, there is great potential for increased information sharing and collaboration among professionals and researchers. For example, the area of clinical trials is ripe for research and practice innovation; cyberinfrastructure can increase the effıciency, effectiveness, geographic reach, and overall quality of clinical research in an effort toward earlier detection and prevention of cancer across information and geographically disparate locations. Research needs to move beyond islands of innovation and form environments of ubiquitous and functionally complete services.
Kaiser Permanente, one of the CRN member HMOs, utilizes an integrated EHR/PHR system that is designed for individual-level access by consumers and practitioners, but also provides population-relevant data for systemwide outcome analyses. Collaborations that similarly integrate information systems between CDC and practitioner public health surveillance systems could yield benefıts in terms of systems improvements as well as data mining and sharing. Future research should reflect the Pasteur’s Quadrant concept of use-inspired approaches: promote models and systems that share information, provide avenues for stakeholders to share their perspectives, and enact solutions. The symposium elicited suggestions about methods for examining connections between public health and health services. CDC is promoting open source technolwww.ajpm-online.net
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ogies as a means to advance their interests in biosurveillance. One example of biosurveillance use might be the introduction of consumer-facing applications, such as the Google Health program, that facilitate the sharing of medical and personal health data from disparate care sources. Indeed, sharing existing data, methodologies, and lessons learned across public health and health services disciplines is essential for promoting a ubiquitous and robust cyberinfrastructure in the health services sector. Stakeholders who provide care or conduct research under the public health umbrella should understand that the data they collect would be shared for research and trend identifıcation to benefıt public and individual health outcomes.
Research Directions Use-inspired research must be motivated by clear, specifıc health concerns, which may be at the level of population or individual health. However, the research must go beyond applied research to demonstrate the effıcacy of an approach or system to address the health concerns; it must further basic knowledge. Investment in basic science discovery should occur in tandem with evaluating new models of public health and health services delivery. Great opportunities exist to further basic knowledge through transdisciplinary research and cyberinfrastructure provides the capability to do such research. Research recommendations by the symposium participants encompassed various combinations and permutations of the dynamics outlined above. The following recommendations fıt the core goal of advancing use-inspired cyberinfrastructure research for public health and health services.
Promoting Transdisciplinary Research Federal funding goals should support research that promotes: increased data sharing and interoperability across existing and future systems, open source technology, and partnerships across diverse groups, including government agencies; healthcare, education, and research organizations; commercial fırms; and advocacy groups. Using models such as those described by CDC surveillance and Kaiser Permanente, researchers, practitioners, and funders can focus on integration and interoperability in the context of EHRs and PHRs. EHRs and PHRs can facilitate efforts to reduce the gaps between individual and often disparate points of care and public health. EHRs and PHRs also produce information systems that enable theoretic and applied research to converge at a use-inspired focal point. The systems cannot perform this task without enhanced interoperability, which federal funders have increasingly advocated in their various funding initiatives. May 2011
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Addressing Technical Barriers Innovations will require changes in the way data are shared, accessed, communicated, analyzed, and used by the public health and health services fıelds. Such innovations would improve anticipation of and response times to developing health issues, potentially averting catastrophic health events and crises. Researchers and practitioners should collaborate to determine best practices for data collection, analysis, and sharing. Funding agencies should support innovative cyberinfrastructure research for public health and health services, such as NSF has done with Cyber-Enabled Discovery and Innovation (www.nsf.gov/crssprgm/cdi/). By bringing an understanding of what already exists and of potential synergies among disparate groups, cyberinfrastructure can advance public health and health services, and accelerate data use to benefıt health outcomes. Examples of such projects include the Grid-Enabled Measures (GEM) database (cancercontrol.cancer.gov/hcirb/cyberinfrastructure/gem.html); consensus measures for phenotypes and eXposures (PhenX; https://www.phenx.org); and the Patient-Reported Outcomes Measurement System (PROMIS; www.nihpromis. org/default.aspx).
Addressing Social Barriers The socioeconomic context plays a large role in access to and interpretation of health information and related health services. Cyberinfrastructure can enable consumers to have increased access to care. However, not all populations can be reached in the same manner, and environmental and cultural factors may alter the impact of this access. Future research should look at ways of increasing consumer access to health information and related health services for underserved populations, determining why access is low, and formulating population-specifıc methods to improve access. Symposium participants highlighted the need to pay special attention to the uninsured and underinsured, and to understand the existing limitations and to develop solutions for reaching consumers across socioeconomic and cultural spectrums.
Consumer-Engaged User Systems Technology functions not only in the passive intake of information, but also has the capacity to promote changes in health behavior; thus, researchers should study the role of human–technology interactions in modifying health behavior. Workflow studies that review organizational and human aspects of technology, and various health services and public health informatics implementations, are also essential to cyberinfrastructure adoption. In the future, research should incorporate the human element—the collaboration, not just computation aspect of
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cyberinfrastructure. To this end, studies need to address the synergies between humans and technologies and develop methods to understand how information is interpreted.
Publication of this article was supported by the National Institutes of Health. No fınancial disclosures were reported by the authors of this paper.
Conclusion Symposium participants provided a framework for an ecosystem of partnerships ranging from public health and health services to researchers and practitioners, to funding agencies and IT vendors. These partnerships are beginning to influence future research directions. Several federal funding agencies and programs are facilitating the role of cyberinfrastructure in public health and health services research. For example, NSF’s Offıce of Cyberinfrastructure is a testament to changes in federal funding goals as the recent NSF grant initiative on Smart Health and Well Being seeks to create new technologies to accelerate discovery for public and population health benefıt (www.nsf.gov/pubs/2010/nsf10575/nsf10575.htm). Additionally, the National Cancer Institute and NIH recently issued a challenge grant award that directly addresses cyberinfrastructure. The health cyberinfrastructure research community should embrace the Pasteur’s Quadrant concept of useinspired research: active collaboration across stakeholders, promotion of models and systems that share information, and avenues through which interested groups can share their perspectives and enact innovative solutions. Cyberinfrastructure holds the promise of bridging the gap between public health and health services, building partnerships between disciplines and sectors, and exploring the connections between social and technical dynamics inherent in informatics generally and specifıcally to health. Most importantly, cyberinfrastructure must be viewed through the lens of social interaction, incorporating user interpretation of data, workflow studies, and organizational considerations. By building strategic partnerships across public agencies, disciplines, and health and academic institutions, cyberinfrastructure research can link informational and collaborative islands to promote robust, ubiquitous, and effective public health and health service delivery systems. The authors acknowledge Dr. Ralph Sprague, Jr., Department of Information Technology Management, Shidler College of Business, University of Hawai‘i at Ma noa, and HICSS-42 Conference Chair for the opportunity to develop the Cyberinfrastructure Symposium, and the National Cancer Institute and Kay Center for E-Health Research for their co-sponsorship of the symposium. The authors further acknowledge the editorial contributions of Olivia Patterson and Richard Moser.
References 1. Atkins DE, Droegemeier KK, Feldman SI, et al. Revolutionizing science and engineering through engineering: report of the National Science Foundation Blue-Ribbon Advisory Panel on Cyberinfrastructure. Arlington VA: National Science Foundation, 2003. 2. Yasnoff W, O’Carroll P, Koo D, Linkins R, Kilbourne E. Public health informatics: improving and transforming public health in the information age. J Public Health Manag Pract 2000;6(6):67–75. 3. Luscombe N, Greenbaum D, Gerstein M. What is bioinformatics? A proposed defınition and overview of the fıeld. Methods Inf Med 2001;40(4):346 –58. 4. Kukafka, R. Public health informatics: the nature of the fıeld and its relevance to health promotion, Health Promot Pract 2005;6:23– 8. 5. Syme SL. The science of team science: assessing the value of transdisciplinary research. Am J Prev Med 2008;35(2S):S94 –S95. 6. Stokols D, Hall KL, Taylor BK, Moser RP. The science of team science: overview of the fıeld and introduction to the supplement. Am J Prev Med 2008;35(2S):S77–S89. 7. National Science Foundation Cyberinfrastructure Council, Cyberinfrastructure vision for 21st century discovery; March 2007. 8. Stokes DE. Pasteur’s quadrant: basic science and technological innovation. Brookings Inst Pr; Washington DC, 1997. 9. Edwards PN, Jackson SJ, Bowker GC, Knobel CP. Understanding infrastructure: dynamics, tensions, and design. Final report from the National Science Foundation workshop, “History and Theory of Infrastructure: Lessons for New Scientifıc Cyberinfrastructures.” Arlington VA, 2007. http://hdl.handle.net/2027.42/49353 10. Contractor N, Hesse BW. Cyberinfrastructure for public health. In: Fortes JA, Macintosh A. Proceedings of the 2006 International Conference on Digital Government Research (dg.o ’06). ACM, New York, 2006. 11. CDC. Monitoring health effects of wildfıres using the BioSense system—San Diego County, California, October 2007. MMWR Morb Mortal Weekly Rep 2008;57(27):741–7. 12. Bradley CJ, Penberthy L, Devers KJ, Holden DJ. Health services research and data linkages: issues, methods, and directions for the future. Health Serv Res 2010;45(5 Pt 2):1468 – 88. 13. Shaikh A, Contractor N, Moser R, et al. PopSciGrid: using cyberinfrastructure to enable data harmonization, collaboration, and advanced computation of nationally representative behavioral, demographic, and economic data. Presented at the 137th Annual Meeting of the American Public Health Association (APHA). Philadelphia PA: 2009. 14. Gibbons MC. Populomics. Stud Health Technol Inform 2008; 137:265– 8. 15. Halvorson GC. Health care reform now! A prescription for change. Jossey-Bass, San Francisco, 2007. 16. Botts NE, Horan TA, Thoms BP. HealthATM: personal health cyberinfrastructure for underserved populations. Am J Prev Med 2011; 40(5S2):S115–S122. 17. Xu J, Kichanek KD, Tejada-Vera B. Deaths: preliminary data for 2007. National vital statistics reports 2009. www.cdc.gov/nchs/data/nvsr/ nvsr58/nvsr58_01.pdf. 18. Murphy KM, Topel RH. The value of health and longevity. J Polit Econ 2006;114(5):871–904.
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Introduction
C
yberinfrastructure constitutes both the technical and social backbone of modern science, research, and related practice. As defıned by the “Report of the National Science Foundation Blue-Ribbon Advisory Panel on Cyberinfrastructure,”1 it includes computational advancements and broadband networking, massive storage and managed information, observation and measurement tools, leadership on shared standards, middleware, and common applications for scientifıc computation. It also focuses on the potential of sharing From the Shidler College of Business and Outreach College (Chismar), University of Hawaii at Ma noa, Honolulu, Hawaii; Kay Center of E-Health Research (Horan, Feldman), Claremont Graduate University, Claremont, California; and the Health Communication and Informatics Research Branch (Hesse, Shaikh), National Cancer Institute, NIH, Bethesda, Maryland Address correspondence to: Sue S. Feldman, RN, MEd, Kay Center for E-Health Research, Claremont Graduate University, 130 East Ninth Street, Claremont CA 91711. E-mail: [email protected]. 0749-3797/$17.00 doi: 10.1016/j.amepre.2011.01.002
S108 Am J Prev Med 2011;40(5S2):S108 –S114
and increasing the available capabilities across the science and engineering research communities, as well as facilitating new applications, collaboration, and interoperability across institutions and disciplines. In public health and health services, cyberinfrastructure has the potential for developing systems that will enable new connections among public health and health services. Public health encompasses surveillance, detection, intervention, and related analyses to improve the health of populations, while health services generally focuses on prevention, treatment, and care activities to improve individual health outcomes. Public health informatics and medical informatics both use information technology (IT) to improve health and health outcomes. However, public health informatics focuses more on improving public health and disease surveillance and prevention, whereas medical informatics focuses more on organizing data for analysis and then providing tools to assist with that analysis. It is typically applied to relationships between technology and medical care.2,3 © 2011 American Journal of Preventive Medicine. All rights reserved.
Chismar et al / Am J Prev Med 2011;40(5S2):S108 –S114
While public and medical informatics have traditionally had different foci, recent developments have highlighted the synergistic possibilities from interwoven initiatives.4 For example, Infection Watch Live (www.kflainfectionwatch. com) is a web-based geospatial application that maps illnesses as reported in emergency departments in Ontario, Canada. Real-time maps provide health providers, school offıcials, and consumers with useful surveillance information to help prevent the spread of disease, provide early detection, anticipate treatment and care, and improve health outcomes. The current and prospective growth of public health and medical informatics applications raises the need for cyberinfrastructure that can manage diverse facets of this burgeoning health-related data spectrum, including production, storage, integration, access, analysis, and retrieval of myriad health data. An important factor underlying this growth is recent federal policies aimed at accelerating health information technology (HIT) utilization. In particular, the Health Information Technology for Economic and Clinical Health (HITECH) Act of 2009 has provided a set of incentives for HIT implication, including provisions to encourage meaningful use of HIT throughout the healthcare industry (healthit.hhs.gov/ portal/server.pt/community/healthit_hhs_gov__home/ 1204). The recently enacted Open Government Directive provides additional guidance for federal agencies to furnish federal data sets, including public health data, for use in health research and practice (www.whitehouse.gov/ open). The emerging need for cyberinfrastructure considerations for public health and health services motivated the authors to organize a symposium entitled “Cyberinfrastructure for Public Health and Health Services” that brought together a diverse group of people from the public and private sectors, including researchers, practitioners, and federal funders. This paper reports on key fındings from this symposium, which was held on January 5, 2009, at the 42nd Annual Hawai‘i International Conference on System Sciences (www.hicss.hawaii.edu/ hicss_42/swt/swt-cph.htm). The symposium had the following objectives: ●
identify the key factors and processes needed for effective utilization of cyberinfrastructure nationally in public health and health services; ● examine the dynamics of transdisciplinary collaboration across stakeholders; ● develop future directions for cyberinfrastructure research in public health and health services. The fırst objective was established to illuminate the benefıcial impacts and challenges of cyberinfrastructure for public health and health services. Challenges to obMay 2011
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taining positive benefıts arise from the gap between health care for individuals and populations, from the difference between who pays for cyberinfrastructure and who receives its benefıts, and from diffıculties in effectively translating research fındings into practice. Symposium discussions focused on using cyberinfrastructure to bridge the gap between public health and individual health services, obtain public health understanding and benefıts from electronic and personal health records (EHRs and PHRs), and realize the opportunities in public health surveillance and health communication. The second objective was pursued to better understand the collaborative processes that are inherent in cyberinfrastructure. Specifıcally examined was the need for a transdisciplinary approach among public health and health services stakeholders and disciplines.5 Stokols describes transdisciplinary research as a “process in which team members representing different fıelds work together over extended periods to develop shared conceptual and methodologic frameworks that not only integrate but also transcend their respective disciplinary perspectives.”6 Inclusive stakeholder groups can form connections between public health and health services by using cyberinfrastructure in accessing individual- and population-level data for public use, developing innovative lines of research, improving practice, acquiring funding, and translating and disseminating fındings. The third objective was established to investigate areas of research and new collaborations that would help realize the full potential of HIT for transforming public health and health services. Specifıcally examined was the need to reengineer the vertical structures now holding scientifıc and medical information to permit collaborative research across disciplines. The symposium examined how cyberinfrastructure can enable interoperability that serves to link existing islands of surveillance data, research and clinical data, and even personal health data maintained by consumers. Regarding research recommendations, the symposium addressed data sharing, computational methods, and interoperability across existing and future systems, for example, the National Cancer Institute’s (NCI) Cancer Biomedical Informatics Grid (caBIG) (https://cabig.nci. nih.gov/), the DHHS Nationwide Health Information Network(NHIN)(www.hhs.gov/healthit/healthnetwork/ background/), and EHR/PHR systems, as well as partnerships across diverse public health and health services entities. Using existing data models, researchers, practitioners, and funders can focus on integration, interoperability, and development of innovative funding opportunities in the context of EHRs and PHRs.
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Figure 1. Pasteur’s Quadrant, showing how the basic confluence of scientific inquiry with applied research results in innovations and a practical understanding that addresses societal needs8
Organizing Framework for Cyberinfrastructure in Public Health and Health Services A major goal of NSF in funding cyberinfrastructure projects is to enable distributed knowledge communities that collaborate and communicate across disciplines, distances, and cultures.7 Research on cyberinfrastructure within the science community has progressed rapidly. Within the specifıc domain of health care and public health, there is a need to accelerate the research cycle to increase collaboration among researchers and practitioners. To facilitate effective research, stakeholders need to determine how they can best collaborate to advance the development and deployment of cyberinfrastructure in public health programs and health services. One potentially benefıcial approach to facilitate collaborative research is “use-inspired research.” Research can be categorized by two extremes: pure basic research (the search for fundamental understanding and principles) and pure applied research (the search for solutions to immediate, practical problems). An alternative to these two extremes is a “Pasteur’s Quadrant” style of research, which is a marriage between theory and practical applications.8 In this research style, theory is grounded, inspired, and informed by practical problems and challenges (Figure 1). Rather than being driven solely by interesting issues, research in this Pasteur’s Quadrant is driven by the desire to address specifıc societal needs— thus the term “use-inspired research”—and fosters an environment linking scientifıc fındings and social value. Cyberinfrastructure provides an avenue for transforming the activities of disparate groups involved in conversations about major public health challenges, such as
health reform, health disparities, and cancer prevention and control. The challenge is to enable and optimize organizations to carry out these activities more effectively, on a larger scale, and with broader participation and transdisciplinarity. A functionally complete “collaboratory” that removes silo infrastructure will help shape the system into a comprehensive cyberinfrastructure. In asking how cyberinfrastructure can best be utilized for public health and health services, collaborative research teams must be cognizant of the social and technical nexus that informs cyberinfrastructure, and work together to initiate use-inspired systems research focused on specifıc health topics. Based on the symposium panels and discussions, the authors suggest three dimensions that constitute the core dynamics of cyberinfrastructure for public health and health services: ● ● ●
technical and social domains; public health and health service domains; health research and practice domains.
These dimensions represent a hybrid of several operative concepts. The technical and social domains provide the foundations for cyberinfrastructure-enabled collaboration, centered on technical instantiations, but done within the context of societal (including organizational) dynamics. The public health and individual health services domains and the research and practice domains provide dimensions across which cyberinfrastructure can enable collaborations. The focus of use-inspired cyberinfrastructure is to fınd permutations and combinations of these factors that create cyberinfrastructure systems that are effective in improving public health and health services. Figure 2 shows the domains and dimensions.
Figure 2. Major dimensions of cyberinfrastructure for public health and health services www.ajpm-online.net
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Such a conceptualization draws from and extends traditional notions of cyberinfrastructure. From the perspective of advancing computational science, NSF and others have recognized that cyberinfrastructure technical advances need to be considered within the sociotechnical content in which it is occurring.9 The potential positive impacts of the technology of cyberinfrastructure can be realized only through behavioral changes that are part of the social aspects of cyberinfrastructure. The development of cyberinfrastructure must be done within the social context of how consumers and health professionals behave, interact with each other, and do their jobs. More specifıcally, the design and use of cyberinfrastructure must enable personal and process changes in behavior at the organizational and interorganizational levels. For example, PHRs can enable a basic change in the collection and utilization of health information and, if integrated into a more comprehensive infrastructure, have the potential to lead to better health outcomes. However, to achieve maximum impact, the behavior of individuals must change, as well as the processes in healthcare delivery. Continuing with the public health– health services dimension, one challenge for researchers is to understand how cyberinfrastructure can help integrate the public health and health services domains. This dimension builds on related work that outlines how cyberinfrastructure can provide a useful bridge connecting health services and population data– centric interests.10 Cyberinfrastructure provides access to information by improving consumer–provider communication, consumer education, and the ability of clinical and public health professionals to reach diverse populations. These capabilities can enhance community health by developing targeted community health profıles, improving public health planning, and enhancing local public health communication and partnerships. For example, de-identifıed data from emergency departments can play a critical role in communicating public health messages and response strategies, as they did during the 2007 San Diego CA wildfıres, which led to the largest evacuation in California history. The public surveillance system datareporting took place via the CDC’s BioSense system from six of San Diego’s 19 hospitals; data were also gathered from 413 emergency departments around the U.S. These data were used to alert public health offıcials to emerging disease trends specifıc to this disaster (respiratory and gastrointestinal) and facilitated post-disaster health surveillance.11 The research–practice dimension holds numerous research opportunities for public health and health services practice. This dimension builds on recent interest to leverage information systems development for both research and practice use.12 Such opportunities range from May 2011
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data mining to knowledge management, and engaging research endeavors to influence population-level public health outcomes. This opportunity is illustrated in the area of tobacco control research in which there is an extensive but widely dispersed research history of scholarship.13 The NCI’s PopSciGrid Consumer Health Data Portal is an evolving platform that demonstrates how disparate health-related data can be integrated, visualized, and communicated using cyberinfrastructure to potentially empower communities and support new avenues of research and policy for cancer prevention and control (logd.tw.rpi.edu/project/popscigrid). The PopSciGrid Portal is designed to explore three innovative goals: (1) to convey complex, health-related information to consumer and public-health decision makers for community health impact; (2) to leverage the growing evidence base for communicating health information on the Internet; and (3) to inform the development of future research opportunities effectively utilizing cyberinfrastructure for cancer prevention and control. Using publicly available data from the CDC and NIH, the portal addresses the White House Open Government Directive and DHHS’ Community Health Data Initiative’s mandate to increase public access to data. The portal enables users to explore state and national trends related to smoking prevalence, cigarette taxes, and smokefree policies, and it can be scalable to incorporate other public health domains.
Dynamics of Transdisciplinary Collaboration Research addressing cyberinfrastructure for public health and health services should be driven by a collaborative approach to promote transdisciplinary and integrative sciences. Such research endeavors require high-performance collaboration environments, not just computation environments. Increasing the intellectual cross-section of distributed knowledge communities will increase the likelihood of transformative results by leveraging existing knowledge through data sharing, and through creating incentives that encourage individuals and organizations to share data with the broader community. To better understand the dynamics of transdisciplinary collaboration, it is useful to look at the three dimensions described in the proposed framework above: technical–social, public health– health services and research–practice.
Social–Technical Collaboration Focused on Consumers Returning to the central concept of use-inspired research, cyberinfrastructure in public health and health services requires principles that can be usefully organized around patient/consumer-centered care and delivering value to
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consumers. This health value to the consumer can be the societal need on which use-inspired research should focus. Use-inspired research would draw on collaboration from multiple disciplines to develop cyberinfrastructure and then use this cyberinfrastructure as a platform for improving focused research that enhances the consumer and patient component to public health and health services. Knowledge of human behavior is essential to improving health outcomes. Scientists already have the beginnings of sociobehavioral genomics, which explores associations between behavioral characteristics and genetics, and applies those understandings to the population as a whole, spawning the emerging fıeld of populomics.14 These insights should be expanded to implications for drug development, behavioral sensitizing, and transdisciplinary integrated science—with its potential for redesigning the public health system from its current reactionary form to one that is proactive and preventive. Technologies are not solely a mechanism for delivering interventions, but can be agents of intervention. Cyberinfrastructure offers opportunities to help extend consumer participation in health services to both uninsured and underinsured groups that have a disproportionate share of chronic health conditions.15 One recent example is the use of a personal health application used in underserved settings made possible by recent cloud architecture developments.16 This challenge of broadening health access and use reaches across organizations, people, and communication, providing a critical opportunity to advance ways of thinking about technology and to develop an information integration, access, and use strategy for a broader array of consumers.
Collaboration would involve research communities who listen to the needs and capabilities of various public health and health services entities to fınd research and practice informatics approaches to vexing health problems. Symposium participants provided numerous examples of existing structures within public health systems and health services, discussing their advantages and disadvantages and how they can be improved and replicated. They focused on how cyberinfrastructure could improve the integration of EHRs/PHRs, data accuracy, surveillance systems, and clinical trials. However, many practitioner institutions are reluctant to promote data sharing; thus, new incentive structures and a reorientation of the value proposition of data sharing must be developed. Process improvements from the use of cyberinfrastructure are labor intensive and thus require cooperation and collaboration on individual and community systems levels. Public health agencies share a similar need for standardized methodologies for data collection, as well as for collaborative information sharing across regions. The NCI’s Cancer Research Network (CRN) (crn. cancer.gov) is an example of such use-inspired research. Cancer, the leading cause of death for people aged 45– 64 years,17 carries an enormous fınancial cost. A 2006 study found that a 1% reduction in cancer incidence would represent over $400 billion in healthcare savings.18 Through the 14 HMOs that make up the CRN, the NCI has addressed a public health issue of daunting proportions by increasing the number of screenings and taking a proactive approach to prevention within real-world clinical settings. Indeed, the CRN could become a remarkable social and technical infrastructure that improves health quality and effectiveness as well as reducing costs.
Public Health and Health Services Collaborations
Research–Practice Collaborations
Bringing together a variety of stakeholders can potentially build bridges across the public health and health services orientations, which as noted above tend to focus on either population-level efforts (public health) or clinical-level analysis (health services). In light of the inherent overlap between these two foci, there is great potential for increased information sharing and collaboration among professionals and researchers. For example, the area of clinical trials is ripe for research and practice innovation; cyberinfrastructure can increase the effıciency, effectiveness, geographic reach, and overall quality of clinical research in an effort toward earlier detection and prevention of cancer across information and geographically disparate locations. Research needs to move beyond islands of innovation and form environments of ubiquitous and functionally complete services.
Kaiser Permanente, one of the CRN member HMOs, utilizes an integrated EHR/PHR system that is designed for individual-level access by consumers and practitioners, but also provides population-relevant data for systemwide outcome analyses. Collaborations that similarly integrate information systems between CDC and practitioner public health surveillance systems could yield benefıts in terms of systems improvements as well as data mining and sharing. Future research should reflect the Pasteur’s Quadrant concept of use-inspired approaches: promote models and systems that share information, provide avenues for stakeholders to share their perspectives, and enact solutions. The symposium elicited suggestions about methods for examining connections between public health and health services. CDC is promoting open source technolwww.ajpm-online.net
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ogies as a means to advance their interests in biosurveillance. One example of biosurveillance use might be the introduction of consumer-facing applications, such as the Google Health program, that facilitate the sharing of medical and personal health data from disparate care sources. Indeed, sharing existing data, methodologies, and lessons learned across public health and health services disciplines is essential for promoting a ubiquitous and robust cyberinfrastructure in the health services sector. Stakeholders who provide care or conduct research under the public health umbrella should understand that the data they collect would be shared for research and trend identifıcation to benefıt public and individual health outcomes.
Research Directions Use-inspired research must be motivated by clear, specifıc health concerns, which may be at the level of population or individual health. However, the research must go beyond applied research to demonstrate the effıcacy of an approach or system to address the health concerns; it must further basic knowledge. Investment in basic science discovery should occur in tandem with evaluating new models of public health and health services delivery. Great opportunities exist to further basic knowledge through transdisciplinary research and cyberinfrastructure provides the capability to do such research. Research recommendations by the symposium participants encompassed various combinations and permutations of the dynamics outlined above. The following recommendations fıt the core goal of advancing use-inspired cyberinfrastructure research for public health and health services.
Promoting Transdisciplinary Research Federal funding goals should support research that promotes: increased data sharing and interoperability across existing and future systems, open source technology, and partnerships across diverse groups, including government agencies; healthcare, education, and research organizations; commercial fırms; and advocacy groups. Using models such as those described by CDC surveillance and Kaiser Permanente, researchers, practitioners, and funders can focus on integration and interoperability in the context of EHRs and PHRs. EHRs and PHRs can facilitate efforts to reduce the gaps between individual and often disparate points of care and public health. EHRs and PHRs also produce information systems that enable theoretic and applied research to converge at a use-inspired focal point. The systems cannot perform this task without enhanced interoperability, which federal funders have increasingly advocated in their various funding initiatives. May 2011
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Addressing Technical Barriers Innovations will require changes in the way data are shared, accessed, communicated, analyzed, and used by the public health and health services fıelds. Such innovations would improve anticipation of and response times to developing health issues, potentially averting catastrophic health events and crises. Researchers and practitioners should collaborate to determine best practices for data collection, analysis, and sharing. Funding agencies should support innovative cyberinfrastructure research for public health and health services, such as NSF has done with Cyber-Enabled Discovery and Innovation (www.nsf.gov/crssprgm/cdi/). By bringing an understanding of what already exists and of potential synergies among disparate groups, cyberinfrastructure can advance public health and health services, and accelerate data use to benefıt health outcomes. Examples of such projects include the Grid-Enabled Measures (GEM) database (cancercontrol.cancer.gov/hcirb/cyberinfrastructure/gem.html); consensus measures for phenotypes and eXposures (PhenX; https://www.phenx.org); and the Patient-Reported Outcomes Measurement System (PROMIS; www.nihpromis. org/default.aspx).
Addressing Social Barriers The socioeconomic context plays a large role in access to and interpretation of health information and related health services. Cyberinfrastructure can enable consumers to have increased access to care. However, not all populations can be reached in the same manner, and environmental and cultural factors may alter the impact of this access. Future research should look at ways of increasing consumer access to health information and related health services for underserved populations, determining why access is low, and formulating population-specifıc methods to improve access. Symposium participants highlighted the need to pay special attention to the uninsured and underinsured, and to understand the existing limitations and to develop solutions for reaching consumers across socioeconomic and cultural spectrums.
Consumer-Engaged User Systems Technology functions not only in the passive intake of information, but also has the capacity to promote changes in health behavior; thus, researchers should study the role of human–technology interactions in modifying health behavior. Workflow studies that review organizational and human aspects of technology, and various health services and public health informatics implementations, are also essential to cyberinfrastructure adoption. In the future, research should incorporate the human element—the collaboration, not just computation aspect of
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cyberinfrastructure. To this end, studies need to address the synergies between humans and technologies and develop methods to understand how information is interpreted.
Publication of this article was supported by the National Institutes of Health. No fınancial disclosures were reported by the authors of this paper.
Conclusion Symposium participants provided a framework for an ecosystem of partnerships ranging from public health and health services to researchers and practitioners, to funding agencies and IT vendors. These partnerships are beginning to influence future research directions. Several federal funding agencies and programs are facilitating the role of cyberinfrastructure in public health and health services research. For example, NSF’s Offıce of Cyberinfrastructure is a testament to changes in federal funding goals as the recent NSF grant initiative on Smart Health and Well Being seeks to create new technologies to accelerate discovery for public and population health benefıt (www.nsf.gov/pubs/2010/nsf10575/nsf10575.htm). Additionally, the National Cancer Institute and NIH recently issued a challenge grant award that directly addresses cyberinfrastructure. The health cyberinfrastructure research community should embrace the Pasteur’s Quadrant concept of useinspired research: active collaboration across stakeholders, promotion of models and systems that share information, and avenues through which interested groups can share their perspectives and enact innovative solutions. Cyberinfrastructure holds the promise of bridging the gap between public health and health services, building partnerships between disciplines and sectors, and exploring the connections between social and technical dynamics inherent in informatics generally and specifıcally to health. Most importantly, cyberinfrastructure must be viewed through the lens of social interaction, incorporating user interpretation of data, workflow studies, and organizational considerations. By building strategic partnerships across public agencies, disciplines, and health and academic institutions, cyberinfrastructure research can link informational and collaborative islands to promote robust, ubiquitous, and effective public health and health service delivery systems. The authors acknowledge Dr. Ralph Sprague, Jr., Department of Information Technology Management, Shidler College of Business, University of Hawai‘i at Ma noa, and HICSS-42 Conference Chair for the opportunity to develop the Cyberinfrastructure Symposium, and the National Cancer Institute and Kay Center for E-Health Research for their co-sponsorship of the symposium. The authors further acknowledge the editorial contributions of Olivia Patterson and Richard Moser.
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