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Library Philosophy and Practice 2007

ISSN 1522-0222

Skeptical Medical Reference: Helping Patrons Find Critical Resources for Consumer Health Issues

Samantha Hypatia Thompson
Reference Librarian
Collier County Public Library
Naples, Florida

Ambrose A. Thompson
New York Public Library
Tompkins Square Branch
New York, NY

 

Introduction

With the popularization of the Internet, there has been a vast proliferation of consumer health material available to the public. Unfortunately, this has only accelerated a pre-existing trend- the fact that much of the material made available is unproven, unreliable, or outright fraud. This requires librarians to make a choice: are they passive and uncritical dispensers of information or are they critical educators who help patrons choose the best information available? In this article we examine the issues facing librarians in this matter and presents skeptical materials that may help librarians to answer critical health questions.

'Natural Cures'

The visible tip of the iceberg isNatural Cures "They" Don't Want You to Know About, by Kevin Trudeau, a book purporting to provide natural cures which have been suppressed by governmental and corporate interests. This book has caused a furor in libraries in the conflict between the public's desire for the book (which is a New York Times bestseller) and the awareness among many librarians that the information in the book may be misleading.

Library Journal reported this debate including a quote that strikes to the crux of the problem: Brooklyn Public Library's Mary Romeo stated that, "as public librarians we cannot, nor should we try, to impose our values or . 'knowledge' on other individuals" (Library Journal, 2006). But at the same time the New York State Consumer Protection Board reports that consumers need to be aware that the book does not contain the "natural cures" for cancer and other diseases that it promises (Sorensen, 2005).

The conflict over Mr. Trudeau's book is a microcosm of larger issues. As the Internet expands we face an increasing proliferation of information. Particularly in the case of health information it is important that users get the best possible data. As librarians we can either act as uncritical dispensers of information or we can provide skeptical assistance in helping library users to determine the quality of the information they are using. To do this we need to consider both the values of our profession and the situation that we face.

Proliferation of Sources

The Internet may be a comparatively new medium but it has become a major source of consumer health information. Studies vary in the actual proportion of Internet users seeking health information. On the lower end of the spectrum, the Fox study (Fox, Raine, and Horrigan et al., 2000) estimated that of an estimated 104 million adult American Internet users, 55% of them use the Internet to find health information. The higher end of the scale was reported by the Harris Poll's "Cyberchondriacs Update" (Taylor, 2001) that suggested that 75% of adult Internet users seek health information online. This explosion in consumer health information seeking has been mirrored by the amount of content available on the Internet.

In print, publishers have long found a ready audience for alternative health publications. Books such asThe Perricone Prescription,Natural Cures "They" Don't Want You to Know About, and its sequel make regular appearances on bestseller lists. Conversely, publishers have largely shown an unwillingness to print skeptical books which conflict with the lucrative fields of alternative health and paranormal publishing. One example can be taken from the experiences of the skeptical author James Randi whose bookFlim-flam was planned for an initial publication run of 17,500 copies but was reduced to a third of that by the publisher and was declared out of print shortly after release despite outstanding orders for the book (Randi, 1982). The primary reasons for this are evidently economic since skeptical books generally do not generate the same sales like the alternative medical publications that they criticize. Faced with the lower sales of skeptical works, few of them get published, and smaller publishers produce most that do go to print.

But What Harm Does It Do?

The first and most obvious question that emerges from collecting and accessing alternative health information is "What harm does it do?" This is a fair question but only to a certain degree. Even if there is no harm in alternative health information we should, as librarians, be providing information critical of it so as to present both sides of the debate. On the other hand, if it is harmful we need to consider, professionally, how we should handle that information.

During an investigation of diabetes information Schmidt and Ernst (2003) reported the following results. Thirteen alternative medicine diabetes information websites were chosen based on the criteria of a) being in the top thirty results in the examination of eight search engines, and b) the website appeared in the top thirty group of at least three search engines. On examination of the websites, Schmidt and Ernst (2003) found that seven out of the thirteen provided information, which they felt confident, would not be harmful to patients. Five websites presented information that was potentially harmful. The remaining website presented information which, if acted upon, would be harmful to a diabetes patient. While this was a pilot study and its sample size is too small to create generalizations, it does point to the fact that many sources of alternative medical information are questionable in nature.

Another difficulty with alternative health information resources in general is what is often referred to as indirect harm. Often alternative information sources suggest that mainstream treatments are either harmful or unnecessary to a patient being treated using alternative methods (Jarvis, 1997). This viewpoint can be harmful to members of the public; who, without information challenging the validity of alternative methods of treatment, may make poor health choices.

The nature of alternative health information made available in print and over the Internet places librarians in a quandary. Should the material be included in a consumer health collection? If material is included, should there be some kind of labeling or vetting process? Should materials critical of alternative health information be acquired as an informational counterpoint?

A Professional Response

As professionals we need to consider our best response to the question of providing alternative health information and materials that are critical of it. The American Library Association's "Freedom to Read" (ALA, 2005) statement provides the best tool for considering the dilemma which this situation places us in.

1) "It is in the public interest for publishers and librarians to make available the widest diversity of views and expressions, including those that are unorthodox, unpopular, or considered dangerous by the majority."

This proposition of the statement speaks for the inclusion of alternative medical information for reasons of diversity. The popularity of this material makes it easy to find and include in a library collection or to access on the Internet. The proposition also calls for the inclusion of materials critical and skeptical of alternative medical information on the grounds of supporting this same diversity. This is particularly important, as these materials are less popular; less published, and are less likely to be found in library collections or commercial book stores.

2) "Publishers, librarians, and booksellers do not need to endorse every idea or presentation they make available. It would conflict with the public interest for them to establish their own political, moral, or aesthetic views as a standard for determining what should be published or circulated."

Being neutral is clearly an important factor in maintaining a library collection and this principle precludes the exclusion of alternative medical information, even if orthodox medical authorities consider it questionable. Likewise, materials skeptical of alternative sources need to be included, even if the adversarial tone many of them take is considered to be in poor taste by many.

3) "It is contrary to the public interest for publishers or librarians to bar access to writings on the basis of the personal history or political affiliations of the author."

In the case of books likeNatural Cures "They" Don't Want You to Know About many become concerned about the background of the author. In the case of Kevin Trudeau this extends to a question about several convictions, jail time, and large fines from the Federal Trade Commission for false claims (Sorensen, 2005). While these concerns are understandable we obviously cannot censor purely on the basis of an author's background, otherwise library collections would lack a large number of texts.

4) "There is no place in our society for efforts to coerce the taste of others, to confine adults to the reading matter deemed suitable for adolescents, or to inhibit the efforts of writers to achieve artistic expression."

Historically alternative medical information sources have had some of their appeal through their style of writing. They are presented in a very readable, friendly, and conversational style which makes them accessible to a wide range of readers. Writings skeptical of alternative materials are typically written for a higher level of literacy and usually use a tone that is either academic or confrontational. These differences in presentation are, however, not a reason to fail to include both viewpoints in a collection.

5) "It is not in the public interest to force a reader to accept the prejudgment of a label characterizing any expression or its author as subversive or dangerous."

This proposition speaks mainly to the question of alternative health information and makes it clear that labeling it as such (i.e. with a spine label) is not an appropriate action. A label would cause a prejudgment, either causing a reader in increase their regard for the book (if they are already inclined towards alternative medicine) or to disregard it (if they are disinclined). As our goal always should be a patron base informed on all sides of an issue this would not be an acceptable situation.

6) "It is the responsibility of publishers and librarians, as guardians of the people's freedom to read, to contest encroachments upon that freedom by individuals or groups seeking to impose their own standards or tastes upon the community at large; and by the government whenever it seeks to reduce or deny public access to public information."

Examining the included list of print and electronic skeptical reference resources it may be quickly noted that the materials are largely the works of individuals and small presses. As such these works and resources are often overlooked in favor of the highly promoted works in alternative medicine. This acts as an unusual encroachment on the public's right to read. If only the materials that are more popular are included in a dialog then a debate may be prevented from being presented at all. Or worse, the only debate presented may be that of the more popular side presenting a series of "straw man" arguments that do not truly represent the views of the other side.

7) "It is the responsibility of publishers and librarians to give full meaning to the freedom to read by providing books that enrich the quality and diversity of thought and expression. By the exercise of this affirmative responsibility, they can demonstrate that the answer to a "bad" book is a good one, the answer to a "bad" idea is a good one."

Alternative health literature is often a "con" argument against mainstream medicine that is not responded to by mainstream medical information sources. Skeptical materials are effectively the "con" argument presented against alternative medical practices. No matter how one views the alternative versus skeptical debate, both sides call for inclusion. This fulfills the affirmative responsibility to increase the diversity of collections without showing favor and without prejudging the situation.

Balancing the Scales

It is clear from the examination of our professional obligations, as expressed in the 'Freedom to Read' statement, that it is not our place as librarians to make a value judgment as to what health modalities will be covered in our collections. This is especially true when the public expresses a clear desire for the information in question.

However, it is also clear that we have a duty to acquire materials that represent mainstream scientific opinion on alternative health care modalities. This is achieved not only through the acquisition of mainstream health information, but also through the acquisition of materials that are specifically critical of alternative modalities.

While the acquisition of skeptical materials may be perceived as confrontational, it needs to be considered due to the nature of materials presented. As an example, when referencing a mainstream reference work on cancer a reader is likely to see large amounts of information on standard care methods but no information on alternative methods. On the other hand, a book on alternative cancer care will tend to address mainstream care methods, typically in a negative light. This does not represent a true debate as it lacks a response from the mainstream health professions. By the inclusion of skeptical materials a more complete opinion can be formed as the reader is exposed to mainstream challenges to alternative health claims.

In our role as educators we can direct interested patrons to critical materials when they inquire about a specific alternative health care modality. This assists our patrons in finding enough information for them to make an informed decision. In this role we do not impose our values on patrons but simply fulfill our professional duty to provide them with the resources that they need to make an informed decision.

What follows are eleven print and five Internet resources which may act as a starting point to improve collections and assist librarians by providing a more balanced viewpoint on alternative health issues than the materials of alternative health proponents will if left alone.

Skeptical Health Print Resources

Barrett, S., & Jarvis, W. T. (1993).The health robbers: A close look at quackery in America. Buffalo: Prometheus.

Health Robbers is a comprehensive book on health fraud that discusses specific forms of quackery, why quackery persists, and what can be done about fraud. Most major forms of health fraud are covered as well as many of the major proponents of fraudulent help.

Barrett, S., et al. (2006).Consumer health: A guide to intelligent decisions. St. Louis: Mosby.

The 8th edition of a college-level book suitable for public library reference collections,Consumer Healthprovides coverage of basic consumer health issues in addition to critical information on both diets and alternative medicine. In support of the material provided, the book backs presented facts with thorough referencing.

Butler, K., & Barrett, S. (1992).A consumer's guide to alternative medicine. Buffalo: Prometheus.

Written by consumer protection and anti-quackery activist Kurt Butler,A Consumer's Guide covers leading alternative health claims. The work tracks the origins, histories, claims, and effectiveness of alternative health offerings.

Homola, S., & Barrett, S. (1999).Inside chiropractic: A patient's guide. Amherst: Prometheus.

Inside Chiropractic imparts in-depth coverage of one of the more popular fields of alternative medicine. The authors present the history and potential benefits of this field while making it clear where its limitations lie. Material used is thoroughly referenced for backtracking and getting second opinions.

Jarvis, W. T. (1983).Quackery and you. Washington D.C.: Review and Herald.

Quackery and You is a 32-page booklet intended to be available in doctors' waiting rooms; it is also suitable as a small publication for libraries. The inviting size of the booklet provides an excellent introduction to the issue of health fraud.

McCoy, B. (2000).Quack!: Tales of medical fraud from the Museum of Questionable Medical Devices. Santa Monica: Santa Monica Press.

An illustrated guide to fraudulent health devices,Quack succeeds in giving good coverage of devices both old and new, which is useful as many of these items go in and out of style over the years.

Randi, J. (1989).The faith healers. Buffalo: Prometheus.

An expose of modern faith healers by professional stage magician and skeptic James Randi,Faith Healers is done in the tradition of Harry Houdini's debunking of spiritualists.

Raso, J. & Barret (1994)."Alternative" healthcare: A comprehensive guide. Amherst: Prometheus.

Examines the philosophies, claims, and practices of alternative health care methods,Alternative Healthcare includes coverage of ayurveda, Cayce remedies, chiropractic, macrobiotics, naturopathy, qigong, reiki, therapeutic touch, and others. More than 200 methods are examined within the scope of the book.

Stalker, D., & Glymour, C. N. (1985).Examining holistic medicine. Buffalo: Prometheus.

Examining holistic medicine presents the facts that holistic medicine is not a distinct concept unto itself, but rather is a combination of unrelated health claims combined with a social protest against modern medicine and society.

Tyler, V. E. (1993).The honest herbal: A sensible guide to the use of herbs and related remedies. New York: Pharmaceutical Products Press.

A scientific expert writes an unusual herbal manual on herbalism from the perspective of a Ph.D. in pharmacognosy. This book does not dismiss herbalism, but it does show where the evidence lies as to the usefulness and limitations of specific herbal cures. It helps to show where herbal remedies may be useful and where they are provably not, all based on evidence and clinical trials.

Wanjek, C. (2003).Bad medicine: Misconceptions and misuses revealed, from distance healing to vitamin O. New York: Wiley.

A well-written introduction to the issues of health fraud and misconceptions, this book is part of Wiley's excellentBad Science series.

Skeptical Health Electronic Resources

Commission for scientific medicine and mental health (CSMMH) (http://www.csmmh.org/)

The CSMME is an organization devoted to the scientific examination of unproven alternative medical and mental health therapies. Due to the proliferation of questionable consumer health information, the CSMMH believes that the need for objective, scientific evaluation of these claims has never been greater.

Committee for the scientific investigation of claims of the paranormal (CSICOP)

(http://www.csicop.org)

Not limited to purely health-related matters, CSICOP is a group that encourages and pursues critical investigation of paranormal and fringe-scientific claims. The group also promotes scientific research, science education, critical thinking, and the use of reason in the examination of important issues.

Federal Trade Commission - Health Fraud Page (http://www.ftc.gov/bcp/conline/pubs/health/frdheal.htm)

In cooperation with the Food and Drug Administration (FDA), the FTC provides resources to help consumers avoid health fraud. Their site has numerous informative resources as well as providing assistance in reporting health fraud to the authorities.

National Council against Health Fraud (NCAHF) (http://www.ncahf.org/)

The NCAHF is a nonprofit advocacy group focused on health misinformation, fraud, and quackery as a public health issue. The site provides information and news on the claims of fraudulent health care providers as well as legal and legislative information about them.

Quackwatch (http://www.quackwatch.org)

Quackwatch is a nonprofit organization whose purpose is to combat health-related fraud, myths, and misconduct. The primary focus of the site is to distribute reliable information on questionable health topics thereby improving the quality of health information available on the Internet.

Bibliography

American Library Association (2005).The freedom to read. Retrieved October 4, 2006 fromAmerican Library Association (http://www.ala.org/ala/oif/statementspols/ftrstatement/freedomtoreadstatement.pdf#search=%22ala%20freedom%20to%20read%22)

Fox, S., Rainie, L., & Horrigan, J., et al. (2000). The online health care revolution: How the web helps Americans take better care of themselves. Retrieved October 7, 2006 fromPew Internet & American Life Project (http://www.pewinternet.org/reports/pdfs/PIP_Health_Report.pdf)

Jarvis, K. (1997). Quackery: How it harms cancer patients. Retrieved October 8, 2006 fromQuackwatch (http://www.quackwatch.org/01QuackeryRelatedTopics/harmquack.html)

Library Journal (2005). What to do about natural cures: Librarians debate.Library Journal, Vol. 130, Issue 18, p. 15.

Orban, E. (2005). Health literacy: Challenges and implications for consumer health librarians.Indiana Libraries, Vol. 24, Issue 3, p 2-6.

Schmidt, K., & Ernst, E. (2003). Complementary/alternative medicine for diabetes: How good is advice offered on websites?Diabetic Medicine, Vol. 20, Issue 3, p. 248-249.

Randi, J. (1982).Flim-flam: Psychics, ESP, unicorns, and other delusions. Buffalo: Prometheus Books.

Sorensen, J. 2005). Cancer 'cures' are empty promises in Kevin Trudeau's 'Natural Cures' book. Retrieved October 4, 2006 fromNew York State Consumer Protection Board (http://www.consumer.state.ny.us/pressreleases/2005/august505.htm).

Taylor, H. (2001). Cyberchondriacs update.Harris poll, #19. Retrieved October 7, 2006 fromHarris Poll (http://www.harrisinteractive.com/harris_poll/index.asp?PID=229)

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