E-Patients: The Techno-cultural Revolution of Health Consumers: Report on the Symposium
Submitted by Linda C. Butson, AHIP, Health Science Center Libraries,
University of Florida-Gainesville;
edited by Brenda R. Pfannenstiel, AHIP
The e-patients symposium was held May 22 at MLA '10, provided six hours of continuing education credit, and was packed with valuable information. Terri Ottosen, AHIP, and Meredith Solomon, Health Sciences and Human Services Library, University of Maryland–Baltimore, served as symposium cochairs and were flanked by an active eleven-member planning committee. The symposium's website links to many of the presentations via the Speakers tab.
In the keynote address, "An Overview of Consumer E-health and E-tools," Lisa Neal Gualtieri, School of Medicine, Tufts University, Boston, MA, provided a history of health care communication and the use of the Internet. She included statistics on Internet use for health information from the Pew Research Center and from Forrester Research. She indicated that there is an erosion of trust in patient-physician communication: Patients often do not admit to using the Internet for health information and providers seldom ask them if they do so. Gualtieri saw three roles for information intermediaries:
- working with patients to teach them how to search for and evaluate website content quality; how to use "user-generated" content, including when to contribute to it; and how to communicate with providers about patients' use of the web to find health information
- working with providers to discuss what patients are doing online, what resources patients need, and how providers can talk with patients about web use; information intermediaries can have a role that goes further than search training
- working with technology to contribute to web design and presentation, identify content to meet health literacy needs, and ensure that health information, patient safety, and the electronic health record (EHR) are integrated; information intermediaries can also help providers learn to use technology effectively
Janet M. Schneider, Library Service, James A. Haley Veterans Hospital, Tampa, FL, and Taneya Y. Koonce, Eskind Biomedical Library, Vanderbilt University Medical Center, Nashville, TN, provided the librarians' perspective in "Librarians in the Trenches." They recounted personal experiences in providing patient information. Schneider, who was at one of the two libraries that piloted MyHealtheVet in 2001, delineated the history of the Department of Veterans Affairs' EHR and its librarians' involvement, and offered suggestions for the roles that librarians can have in EHR implementation. Koonce discussed the library's integration of evidence into the EHR at Vanderbilt as well as the linkages to consumer health information in Vanderbilt's patient portal, MyHealth@Vanderbilt.
"Consumers in the Trenches” addressed the value of and need for participatory medicine and consumer advocacy. Regina Holliday and Dave DeBronkart are patient advocates who have been active in health care reform. Both Holliday's husband and DeBronkart were diagnosed with kidney cancer. Each offered a moving story about the diagnoses, treatments, and need for information and patient advocacy. Their presentations, which are available on the symposium website, demonstrate the power of information and the roles that librarians and information providers can have in improving patient experiences.
Three electronic health record products were demonstrated:
- MyChart-MyHealth, the Institute for Family Health's implementation of EPIC's patient portal, which provides a web-based way for patients to see their health records, was presented by Maxine Rockoff, Department of Biomedical Informatics, Columbia University, New York, NY. The Institute for Family Health has worked with the National Library of Medicine and EPIC to create MedlinePlus Connect, which will enable health information in MedlinePlus to be linked to health records. Rockoff discussed the training sessions that are being planned to assist patients and advocates in using the MyChart-MyHealth system.
- My PHR (www.myphr.com) was presented by Allison Vance, American Health Information Management Association, Chicago, IL. This resource is designed to help consumers understand and manage personal health records, and it offers information on obtaining records, privacy rights, and the steps involved in creating a personal health record.
- MyHealtheVet, which was rolled out in 2003, was designed to offer veterans, active duty soldiers, their dependents, and their caregivers anywhere, anytime Internet access to health care information and services. Schneider took the audience through a number of screenshots to demonstrate its features. She noted that anyone can access the site without logging in, but one must register to create a personal health record. Creating a personal health record is not limited to veterans; at least for the present, it is free and open to all users.
As a new consumer health librarian, the author found that the symposium provided a good overview of current issues and concerns. It offered opportunities for networking with other librarians as well as illuminated new opportunities for collaboration with health care providers and patients as EHRs are extended into private practices.
Reprinted from MLA News
August 2010