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April, May, June, 1997
Volume 43, Number 2

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Creating Partnerships for the Distribution of Consumer Health Information

by Barbara Woods Collins and Ann B. Sasser

There is little doubt that the managed care model in this nation’s health care system has impacted the delivery of health and medical information to consumers, and that the increased need for in-depth information by this population of library users will continue to place demands on the resources of medical and public libraries. Partnerships will result in better use of the resources and the singular strengths of each of these institutions.

"Years ago, many patients didn’t even want to hear the ‘C’ word; now they want to know if the increased risk of uterine cancer outweighs the potential benefits of tamoxifen for a premenopausal woman with breast cancer, a high percentage of positive estrogen receptors and a strong family history of uterine cancer." Writing in the American Medical News, Dr. Greg Borzo describes the information hungry health care consumer who is emerging within the health care delivery system. Dr. Borzo’s comments were written a year ago, and the phenomenon of the information empowered patient/consumer has only increased in momentum during that year.

Patients have always been information seekers, but have not always found it easy to locate the quality and depth of medical information that has been readily accessible to health care professionals. Just a few years ago the names of medications were not printed on the medicine bottle for fear of confusing the patient (or perhaps because the patient had no need to know, just to comply). It has not been that long ago that librarians were warned that medical and legal information was to be dispensed, along with medical and legal advice and services, only by physicians and lawyers. Public librarians lacked the resources necessary for in-depth medical information retrieval, and they were reluctant to act as intermediaries in the quest for patient education.

Medical librarians in hospitals and medical schools have wrestled with the question of access to their collections by patients, and they are still debating their responsibility or lack thereof. The American Medical Association took on the debate in 1991, when its Library and Information Management Division conducted a survey of 481 hospital and medical center libraries to determine how much patient education was being provided. While only 10 per cent of the responding libraries (307) reported offering no patient education, access to the entire medical collection was limited in some institutions, and in others the patient had access only to a "non-technical" collection. Opposition by some survey respondents to allowing patients access to the medical library ranged from concern that the patients might disturb the physicians while they used the library to an expressed fear that access to medical information might actually be harmful to the patient.

Much has happened over the past decade that has influenced the steep increase in demand by the general public to medical literature and reference materials. We have become a more health conscious nation; wellness has became trendy. Patient advocacy groups and the women’s movement added their messages demanding the right of all citizens to information. Librarians, whether in hospitals or in public libraries, have traditionally been advocates of this right to information, but have been hampered by limits in space, staffing, and resources. Only the most determined and tenacious patients or consumers could expect to find access to the type of information easily accessible to their physicians. And, if they did find this access, the information they presented to their physician might not be graciously welcomed. Physicians have been known to demand, "Where did you get your medical degree?" or "Do you have a license to practice medicine?" when confronted by patients who had obviously been studying the state of their health or that of their families.

Then managed care happened. Suddenly an informed patient became an asset, since money is no longer made by treating disease but by keeping people well. Health care providers in this environment value an informed consumer. Information is seen as "one tool to help improve patient satisfaction and reduce costs." At the same time the information superhighway has extended to the masses, with its plethora of information on health topics. CNN began informing ordinary folks what to expect in today’s New England Journal of Medicine—before the doctor received his copy. "Alternative therapies" or "complementary medicine" approaches are growing in popularity and acceptance, and physicians are being asked to deal with subjects about which they have no expertise and which they have traditionally treated with disdain. "Patient managed care" is the new paradigm. The atmosphere of the physician/patient relationship is being re-defined by all these factors. The traditional model of an authoritarian physician, issuing orders and demanding compliance, is becoming obsolete. Patients are expected to take more responsibility for their own health and for the management of chronic illness, and this responsibility requires a more informed patient/consumer than we have ever had to serve.

At the Partnerships for Networked Health Information conference at Georgetown in April, 1997, the messages were loud and unmistakable. Witness these words from Molly Coye, a physician and public health professional who is now an executive with the Health Desk Corporation, a distributor of integrated online health systems:

"As we move into the next decade, networked consumer health information systems will transform the face of health care, just as the baby boom generation and the economic incentive of managed care has forced it to change in the recent past¼ . The new technology will be the equivalent of a nuclear attack to change behavior¼ . [It] will assist in the creation of new types of professionals [and] will generate powerful new consumer and patient knowledge, expectations and capabilities. Most health professionals are unaware of the sea change that is coming."

The Danville Regional Medical Center and its medical librarian, recognizing that provision of this level of medical information services to an entire community lay outside the limits of the hospital library’s resources, have entered into partnerships to share the responsibility for the delivery of health information.

The first partnership was formed between the Danville Regional Medical Center’s Ralph R. Landes Medical Library and the Danville Public Library for provision of the Health Reference Center consumer health database. Danville Regional Medical Center provided funds for the software subscription; Danville Public Library provided the hardware and technical support. This served to extend the hours that this important information resource is available to the public, since the public library’s service hours and staff resources greatly exceed those of the one-person library at DRMC. The hospital has provided promotional materials, and the hospital librarian is available for staff training and consultation.

The Danville Outreach Project involves the partnership between the DRMC library and the University of Virginia Claude Moore Health Sciences Library to provide a medical outreach librarian for the region. This project, funded by the E. Stuart James Grant Charitable Trust (a local Danville trust), allows a full-time librarian to extend health information services to under-served health professionals and citizens, and provides a modest budget for resources. This project has taken over the funding of Health Reference Center in the Danville Public Library, and has added a subscription for the Pittsylvania County Public Library as well. Additionally, this project has made available an index to consumer health Internet resources to the community at large.

The Danville Outreach Librarian, having been charged with the provision of information services to both professionals and consumers, has attempted to meet the needs of both of these user groups—of both parties in the new physician/patient partnership. Not only have we taken the information traditionally accessible only to professionals and offered it to consumers; we have also taken on the task of keeping physicians and other primary care providers alert to health news that might otherwise be reported to them first by their own patients. A monthly publication called "What’s Up Doc?" reports health items from the popular press, cable and Internet news services as their patients might have read or heard them, and cites the source of the information. This may not have put the physician and the patient on the same page, but we have made an attempt to provide them with the same book, written in the same language!

An extension of this service, and a chance for further collaboration between public and hospital librarians, might be programs to provide the consumer with the skills necessary to evaluate the numerous and often confusing medical news items. An article in a recent Consumer Reports explains some of the questions a consumer needs to ask in order to evaluate the validity of a medical study. We need to assure that the medical information seeker has access to this type of evaluative material. As information professionals skilled in the evaluation of information sources, we must offer as many road maps as necessary to guide consumers through an overwhelming amount of often confusing information. As consumers attempt to pull their own weight as partners in their own health care, they will need our help.

A third partnership at DRMC is with a community initiative called "Healthier Piedmont People," a coalition of health providers, community and government leaders, educators, etc., working together to develop programs that will improve the health of the citizens of Danville, Pittsylvania and Caswell Counties. By working actively with this coalition’s Education and Information Task Force, information specialists from DRMC, the Danville Outreach Project, Danville Public Library and Pittsylvania County Public Library work toward forging new alliances and creating new community projects—across institutional lines—that will improve the health of our community through access to information.

Collaboration between hospital librarians and public librarians is natural, and has the potential to benefit all concerned. Managed care providers, with their goal of cost containment through wellness and disease prevention, should see this collaboration as a means of increasing the number of access points to health information. Whether these partnerships involve sharing of resources and expertise, training opportunities, collection development collaboration, or even monetary support, they are well worth pursuing in our efforts to provide the information necessary to provide good health care to an informed community.

We have all done our share of complaining about the new face of health care. However, one good has come out of it—the value of information that we have always recognized is now accepted as a primary part of the health care delivery process. I am confident that libraries will continue to be a vital part of the "patient managed care" environment.

A version of this article was presented by the authors at this year’s Medical Library Association Annual Conference.

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