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How do you find health information for your own use? Have digitization and the growth of digital records impacted patients, healthcare practitioners, and information managers of medical records? This panel will present research and discuss with the audience how information technology impacts society and individuals. The panelists will share recent findings from their research on the transformation of personal and professional medical and health informatics. Presentations on the application of maps of perceived value, preconceptions about consumers, and the role of web-based communication will show how assumptions about healthcare information are changing the professionals, consumers, and systems.

According to many experts in the field of medicine, there is potential for a crisis in the collection and distribution of patient records and community health. In the 1990s the introduction of HIPAA (Health Information Privacy and Accountability Act) regulations protected individual privacy. How have electronic records transformed society and/or information? How is the technology changing information practices? This panel builds on earlier research on these questions as reported at the 2007 ASIS&T Annual Meeting, and it is intended to provide an opportunity to share new findings about recent transformations. Each presenter will answer one of the following questions and will ask attendees to share their experiences, to respond also, and to ask more questions:

  • 1.
    How can we use maps of the perceived value(s) of information flows to educate interdependent stakeholders in a healthcare domain?
  • 2.
    How does our understanding of the consumer and our assumptions about what consumers think and feel affect our research into healthcare communication?
  • 3.
    What is the boundary between personal views and the public health information space?

Format: Presentations (15 min. per topic) with discussion (during and after panel presentations).

1. How can we use maps of the perceived value(s) of information flows to educate interdependent stakeholders in a healthcare domain?

  1. Top of page
  2. 1. How can we use maps of the perceived value(s) of information flows to educate interdependent stakeholders in a healthcare domain?
  3. 2. How does our understanding of the consumer and our assumptions about what consumers think and feel affect our research into healthcare communication?
  4. 3. What is the boundary between personal views and the public health information space?
  5. Brief Biographies
  6. References

Tim Patrick and Paula Rhyner

A project at the College of Health Sciences in the University of Wisconsin-Milwaukee is developing the Early Childhood Integrated Database System (ECIDS) to address the critical information needs of the developmentally disabled community (from birth to 3-years old) in Milwaukee County. As part of this project, we have developed communication maps (Westerlund, Lindquist & Sundblad, 2001) to specify and represent characteristics of the ways in which information actually flows among individuals or groups in the birth-to-3 community as well as the way various stakeholders believe that it flows. A significant benefit of these maps is that they allow us to discover the, at times, widely divergent ways that information exchanges are valued by otherwise interdependent stakeholders in birth-to-3 services.

This panel presentation describes how we have used the results of communication mapping in birth-to-3 to develop cases or scenarios of information exchange that make clear the different ways those exchanges are valued by different stakeholder groups. It is clear that not all stakeholders in birth-to-3 services (e.g. physicians, caregivers, teachers, parents, insurance payers and many others) will be directly targeted users of the ECIDS system. Though community-wide consensus on the design details of ECIDS is neither feasible nor possible, we believe that ECIDS will be successful only to the extent that it addresses, at least indirectly, the birth-to-3 related needs of all of the stakeholders in birth-to-3. Thus, successful system design requires that targeted users of the ECIDS system, as well as the developers of the ECIDS system themselves, be aware of the information needs and values of stakeholders generally in birth-to-3 and of the differences among them The development of such value maps for birth-to-3 services in clarifying and highlighting those important information flows and differences among them is key to the success of the ECIDS project.

2. How does our understanding of the consumer and our assumptions about what consumers think and feel affect our research into healthcare communication?

  1. Top of page
  2. 1. How can we use maps of the perceived value(s) of information flows to educate interdependent stakeholders in a healthcare domain?
  3. 2. How does our understanding of the consumer and our assumptions about what consumers think and feel affect our research into healthcare communication?
  4. 3. What is the boundary between personal views and the public health information space?
  5. Brief Biographies
  6. References

Catherine Arnott Smith

Research into the “consumer health vocabulary” problem is predicated on certain seldom-challenged assumptions. One is that medical terminology is always an obstacle to effective understanding; another is that a distinct vocabulary exists spoken by consumers and not by people with healthcare expertise; a third is that this distinct vocabulary can be captured and mapped to clinical terms in order to break down the formidable walls between the consumer and professional communities. However, there remain open questions for researchers: How high, and how wide, are these vocabulary walls? And when configuring the consumer, how do our preconceptions affect our priorities?

In this presentation, I propose that the medical informatics field has configured “consumer” in a particular way that has reified Foucault's “medical gaze” of a paternalistic profession, rather than rejecting it. I examine the ways in which researchers have set up the notion of a “consumer” over time and present data suggesting that predefined expectations are not being borne out by research. Researcher expectations and the implications of these expectations are important aspects of information use which medical informatics must confront in order to really solve information problems. Information scientists within and without healthcare specializations can be of great value contributing to this enterprise.

3. What is the boundary between personal views and the public health information space?

  1. Top of page
  2. 1. How can we use maps of the perceived value(s) of information flows to educate interdependent stakeholders in a healthcare domain?
  3. 2. How does our understanding of the consumer and our assumptions about what consumers think and feel affect our research into healthcare communication?
  4. 3. What is the boundary between personal views and the public health information space?
  5. Brief Biographies
  6. References

Deborah E. Swain

The diffusion of information technology in the health field, as Don Berwick (2003) predicted, requires various approaches over time. In this presentation, I will discuss the boundary between personal views and the public health information space based on a summary of changes over the past year at an e-home for NC Public Health Informatics Practitioners (http://www.ncphip.org). The web page was established and introduced in 2007 and continues with the support and cooperation of the School of Library and Information Sciences at NC Central University, the NC Healthcare Information and Communications Alliance (http://www.nchica.org/) and the NC Institute for Public Health (http://www.sph.unc.edu/nciph/). Transformations in both information and people were based on users and designers communicating on how to use forums or blogs to exchange information about public health practices as well as about personal concerns. Health education and IS students completed projects to support the social networking among web page users. Research questions varied and approaches included surveys, training, and online meetings for users and professionals whose busy work lives limited opportunities to meet at the same time and place:

  • To advance health information across the state, training was developed on how to use the National Library of Medicine (NLM) in communities identified as having disparities in healthcare. Could the web page provide training details and helpful support after face-to-face sessions? Could it extend effort to reduce disparities?
  • Because the state has been in the midst of a serious drought, information, research, and education on the legal and effective use of water has become an important community online discussion topic. Can personal views be honestly shared about using bath water to water gardens (illegal according to public health laws)?
  • Is public information such as news, surveys, and examples of effective electronic health record (EHR) adoption useful for professionals? Noting that rural health centers and small practices are late adopters of computers-based information, the findings of a study of African-American doctors towards EHRs were shared.

Brief Biographies

  1. Top of page
  2. 1. How can we use maps of the perceived value(s) of information flows to educate interdependent stakeholders in a healthcare domain?
  3. 2. How does our understanding of the consumer and our assumptions about what consumers think and feel affect our research into healthcare communication?
  4. 3. What is the boundary between personal views and the public health information space?
  5. Brief Biographies
  6. References
  • Catherine Arnott Smith, casmith24@wisc.edu, School of Library and Information Studies, University of Wisconsin-Madison. Researching consumer health vocabulary and how the words consumers use when describing health information needs impacts information systems, particularly personal health records, and healthcare knowledge management.
  • Tim Patrick, tp5@uwm.edu and Paula Rhyner, prhyner@uwm.edu, College of Health Sciences, University of Wisconsin-Milwaukee. Currently investigating the application of knowledge management tools for improving information retrieval in a children's health informatics project. (Specifically they are mapping social networks.)
  • Deborah Swain, dswain@nccu.edu, School of Library and Information Sciences, NC Central University. Working on the growth of an online community and social network among public health informatics practitioners in North Carolina, offering them knowledge management tools and training.

References

  1. Top of page
  2. 1. How can we use maps of the perceived value(s) of information flows to educate interdependent stakeholders in a healthcare domain?
  3. 2. How does our understanding of the consumer and our assumptions about what consumers think and feel affect our research into healthcare communication?
  4. 3. What is the boundary between personal views and the public health information space?
  5. Brief Biographies
  6. References
  • American Hospital Association. (1999). Hospital Statistics. Chicago.
  • Berwick, D. (2003). Disseminating innovations in health care. Journal of the American Medical Association 289.
  • Westerlund B., Lindquist S., Sundblad Y. (2001). Cooperative design of communication support for and with families in Stockholm - communication maps, communication probes and low-tech prototypes. CID, Centre for User Oriented IT Design, Report no. CID-140, 2001. [URL: http://interliving.kth.se/publications/CID-140.pdf]