Consumer HealthInformation-Boone Tree

Library AssociationSeptember 26, 2004

Rick Wallace, MSLS

Quillen College of Medicine Library

• Martin, E.R. & Lanier, D. Networking consumer health information: bringing the patient into the medical information loop. Bulletin of the Medical Library

Association, 84(2), 24-6.

Studies show that the most requested category of information at public libraries is health information.

• Librarians from the University of Illinois, Chicago medical center were assigned as liaisons to work with public librarians in rural Illinois counties.

• This paper described a project in Illinois that used the Health Reference Center database to provide consumer health information service to public libraries and clinics. The state of Tennessee has purchased a license to Health Reference Center (www.state.tn.us/sos/statelib).

• LaRocco, A. The role of the medical school-based consumer health information service. Bulletin of the

Medical Library Association, 82(1), 46-51.

• Physicians have been resistant traditionally to provide patients with information. This pattern has increased with the efficiency focus of managed care. Physicians are required to see as many patients as possible, which has cut down doctor-patient interaction time even more.

• … librarians must change tactics when dealing with consumers. They must be more proactive, more probing in the reference interview and more analytical in regard to the patron’s ability to comprehend information than they have been with health professionals.

• “In providing information from the professional literature, librarians need to guard against offering diagnosis or recommending treatments. This would constitute ‘information malpractice’ and clearly would be a transgression of the librarian’s professional mandate”

• A valuable service that a medical library can provide to consumers is information on support groups.

www.acor.org

• Klauber, J. Living well with a disability: how librarians

can help. American Libraries, 29(10), 1-4.

According to census statistics, over 50 million Americans – one out of every five people – have some kind of disability that interferes with their ability to perform everyday activities”

The organization Disability Resources publishes a journal that “monitors, reviews and reports on resources for independent living” (p. 2). They have a web site at www.disabilityresources.org.

• Muir, A and Oppenheim, C. The legal responsibilities of the

health-care librarian. Health Libraries Review (12), 91-99.

“Liability is the duty of care that one individual or organization owes to another…” (p. 91). Contract law may come into play with the provision of information to the public. Contracts do not have to be two-sided, involve money or be written. Tort law gives the right to sue for damage based on what is perceived as professional negligence.

There is less probability of liability for information provided to a health professional than there is for information provided to consumers. Professionals are expected to have a pre-existing base of knowledge to measure new knowledge against.

• Fee-based services have a greater liability risk than free services. Fee-based services should have a written contract. Institutions that provide free information voluntarily are less liable than those who are required to provide free information

• … librarians should not try to interpret the results of information or apply it to patients. Disclaimers can be useful, but if harm is caused by the information provided, the disclaimer may not hold up in court.

• Bruegel, R.B. Patient empowerment- a trend that matters. Journal of AHIMA. 69(8), 30-35.

• Patient empowerment can be defined as the increasing ability of patients to actively understand, participate in, and influence their health status” (p.30). Consumers of health services are demanding more input into how they are treated. The advent of the Internet has given patients increased access to information. Competition for patients will intensify in the future with the result that expectations for customer service by patients will rise. One way healthcare organizations will provide customer service is by providing consumer health information.

• Davis, T.C., Crouch, M.A., Wills, G., Miller, S., Abedou, D.M. The gap between patient reading comprehension and the readability of patient education materials. The Journal of

Family Practice. 31(5), 533-538. • In this study, 151 adult primary care patients were

tested for reading abilities. Patients from the private clinics tested were mainly white and educated past high school, whereas the public clinic patients were mainly black and had less than a twelfth grade education. The average (mean) reading level for the patients based on school grade was 6.8 for university clinic patients, 5.4 for community clinic patients, and 10.8 for private clinic patients. Compare to this that “most written education materials required average reading comprehension grade

levels of 11th to 14th” (p. 535).

• Therefore, there is a critical need to develop reading materials for patients with low literacy levels. It is false to assume that someone reads at the same grade level from which they graduated. Studies have shown that patient reading levels may be three to four levels below actual grade level.

• Licciardone, J.C. Smith-Barbaro, P., Coleridge, S.T. (2001). Use of the Internet as a resource for consumer health information: results of the second osteopathic survey of health care in America (OSTEOSURV-II). Journal of Medical Internet Research. 3(4), e31

<URL:http://www.jmir.org/2001/4/e31>

• The Pew Internet and American Life Project did a telephone survey that concluded that 52 million American adults use the Internet for health information.

• This study’s findings indicated the Internet users were more middle-aged than young or old, more often men than women. The Internet has passed radio as a source of health information, but trails print media and television. The article concluded with a declaration of need for greater Internet access across the nation, particularly for the elderly.

• Hollander, S.M. (2000). Providing health information to the general public: a survey of current practices in academic health sciences libraries. Bulletin of the Medical Library Association, 88(1), 62-69.

• The National Library of Medicine (NLM) has decided “ … to play a larger role in providing health information to the general public …” (p.62). The database MEDLINE was made available to the public in 1997. The volume of searches increased from 7 million in 1997 to 120 million in one year. Consumers, it was estimated, executed one-third of these searches. NLM created the MEDLINEplus web site specifically for consumers in 1998.

• Smith-Barbaro, P.A., Licciardone, J.C., Clarke, H.F. & Coleridge, S.T. (2001). Factors associated with intended use of a Web site among family practice patients. Journal of Medical Internet Research, 3(2), e17. Retrieved February 4, 2002 from http://www.jmir.org/2001/2/e17

• This finding may indicate that having Internet access in a public place such as a library might not influence people to use it to find health information for their health problems. The reason this might be true is that health information is private and looking for it in a public place can lead to embarrassment.

• Older patients were less likely to use the Internet for health information even if they had access at home. This suggests a need for training the elderly in Internet skills. Medical conditions and resistance to change may also influence the older peoples’ use of the Internet.

• Deering, M.J. (1996). Consumer health information demand and delivery: implications for libraries. Bulletin of the Medical Library

Association, 84(2), 209-216.

There is no typical consumer of consumer health information. The elderly are more frequent consumer health information users than other ages. The young are the most likely age group to use technology such as the Internet to find this type of information. The disabled are frequent users of consumer health information and are the most dissatisfied with it.

• Women use consumer health information slightly more than men, mainly because they seek information for their children as well as themselves. "The ‘Health Poor’ are three times more likely than the ‘Health Wealthy’ not to seek health information when they have a health problem and are twice as likely to have problems getting information."

• The two conclusions of this article were: (1) consumers are using multiple sources to access health information, therefore, overburdened physicians should partner with other health information providers and (2) there is so much information that consumers are overwhelmed and confused. Consumer health information needs to be better organized and networked. Librarians are skilled at this.

• Wood, F.B., Lyon, B., Schell, M.B., Kitendaugh, P., Cid, V.H. & Siegel, E.R. (2000). Public library consumer health information pilot project: results of a National Library of Medicine evaluation. Bulletin of the

Medical Library Association, 88(4), 314-22. • This study was a project by the National

Library of Medicine (NLM) with three Regional Medical Libraries (RML). In three geographic regions, eight resource (academic) medical libraries were partnered with forty-one public libraries. Since 1997, NLM has turned its resources towards finding better ways to provide health information to consumers.

• Most of the public libraries had not previously focused on health information. They were worried about giving out misinformation. The public librarians in general said that health questions constituted 6-20% of the queries they handled at the reference desk. Health questions tended to take longer to answer because of their complexity. Each library received a $5,000 grant from NLM.

• Access to Electronic Health Information

• The purpose of this Access to Electronic Health Information proposal is to provide reliable and authoritative consumer health information to northeast Tennesseans, and to provide training in locating reliable and authoritative information to health and medical professionals in northeast Tennessee, by 1) extending consumer health information training to public library personnel in the same 17 county area serviced by the library’s Clinical Librarian, 2) extending training and information services to county and regional public health workers within the Northeast Tennessee Regional Health System,

• 3) providing training in location of professional and patient education information to additional health professionals in the Clinical Librarian’s service area, 4) initiating training opportunities to encourage public librarians to participate in MLA’s Consumer Health Information Specialization Program, 5) continuation and expansion of the HealthInfo Express@Your Library service, and 6) promotion of NNLM membership among participating institutions.

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• Risk, A., Dzenowagis, J. (2001). Review of Internet health information quality initiatives. Journal of Medical Internet Research, 3(4), e28. Retrieved February 4, 2002 from

• http://www.jmir.org/2001/4/e28 •  

• If “health” is entered into the Google search engine it produces over 60 million pages. It is estimated that there are over 100,000 health-related Web sites. Of the estimated 168 million American adults who have Internet access, 86% are estimated to use it for looking up health information.

• Guard, R., Fredericka, T.M., Kroll, S., Marine, S., Roddy, C., Steiner, T., Wentz, S. (2000). Health care information needs & outreach: reaching Ohio’s rural citizens. Bulletin of the Medical Library Association, 88(4), 374-81.

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• NetWellness is a consumer health initiative in the state of Ohio. NetWellness has focused on providing information, providing training, using the existing telecommunications infrastructure for consumer health information, extending the information superhighway into underserved areas, and contributing to the health education of Ohio citizens. NetWellness has about 1.3 million hits per month from all over the world on its Web site.

• Eysenbach, G. Jadad, A.R., (2001). Evidence-based patient choice and consumer health informatics in the Internet age. Journal of Medical Internet Research, 3(2), e19.  

• Consumers need information to make decisions about their health. Part of the medical profession is not comfortable with a new trend for patients to be involved in making decisions about their health care. “ A survey … shows … only 39% of all (medical) professionals see the Internet as a valuable health information source for consumers.” (p.291) In contrast, 70% of consumers believed the Internet provided helpful health information. Amazingly, in one study, 65% of information provided by patients to physicians was new to the doctor. Many providers are worried that consumers will retrieve the wrong information or interpret correct information incorrectly. Another concern of physicians is that office visits will take longer with patients who have researched their own condition, resulting in lost physician income.

• There is a problem in the U.S. with low health information literacy. Compounding this is the fact that much health information literature is written on a higher reading level than the national average. Therefore, the paradox exists that the greater the need for good health information in a population (the poor) the less of it there is that is useful. “In the past, health professionals had to cope with information overload, while consumers had to cope with information deficit.” (p. 295) This is changing. The average medical consultation in the U.S. is twelve minutes. It is no wonder consumers are thirsty for information about their health. There are genuine concerns about the validity of health information on the Internet.

• Calabretta, N. (2002). Consumer-driven, patient-centered health care in the age of electronic information. Journal of the Medical Library Association, 90(1), 32-37.

•  • A report in 2000 by the Pew Internet

and American Life study “ … noted that twenty-one million of the fifty-two million American adults who sought health information online reported that the resources they found on the Web directly affected both their health care decisions and interactions with their doctors.” (p. 33) Consumers believe that information can save lives.

• Bolton, V. & Brittain, M. (1994). Patient information provision: its effect on patient anxiety and the role of health information services and libraries. Health Libraries Review, 11, 117-132.

•  • Patients have less anxiety when they

understand their condition. A component of anxiety is helplessness. A patient with lower anxiety has less infection after surgery. Information reduces anxiety. However, this may not be true in a patient who has an external locus of control. They believe that external factors control their health outcomes; therefore, information does not empower them. Nurses are often called on to provide information to patients. Most information given to patients is given verbally. It is often given in a way that makes the patient believe the provider really does not have time to provide information. The Planetree movement in the U.S. is one effort to reverse this trend.

• Because of the need by patients for health information, every general practitioner should be better trained to communicate information to patients. Every hospital should have a library “ … which caters for patients as well as medical staff.” (p. 130) These types of skills and attitudes need to be inculcated into medical education. Also, major public libraries should run health information services.

• Maryville, TN Model