Patient Education
 
by
Marjorie Lazoff, MD
Emergency Medicine
Philadelphia, Pennsylvania
Medical Editor
Medical Computing Today

 
accepted for publication in Medical Computing Today September 1998
 
Originally published in the September and October 1998 issues of Medical Software Reviews


Sections
Present Limitations - Institutions - Organizations - Government - Collaborations - Corporations
Physicians/Groups - Other - Lists and Reviews - Services - Support Groups



About 15.6 million adults searched the Web for health information in 1997, up from 13.8 million in 1996. Projected increases to more than 27 million in 1998 represents nearly half of all Internet users.1 Health on the Net’s May-June 1998 Survey of Internet users further documents the impact and global nature of the medical Web, and the public’s enthusiasm for online health information.

In mid-1996, even before these trends were known, AMNews staff writer Greg Borzo observed in his article Educated patients: partners or pains? that free Medline and other medical resources on the Web were fueling a revolution in medical practice. "People want more information and patients want more say... (t)his sea change requires physicians to play a variety of new roles. In some cases, they will act as a consultant rather than a final authority. They will help patients sort and sift through information, including armfuls of misinformation."

The issue is a variant of one well known to physicians: how to provide patients with accurate information that addresses their individual needs, interests, degree of literacy, and physical limitations? Can the Web’s technology, popularity, vast storage capacity, and relatively low cost become part of the solution to providing quality patient education rather being than part of the problem? The short answer is probably yes, but only if we physicians, individually and as a profession, serve the U.S. and international community by dedicating time and energy to the task.

In ACP-ASIM’s Computers in Medicine article on Patient Education, Robert Hayward, MD, and Gary Kahn, MD, refer specifically to software, but the issues they raise are important to all forms of patient education technologies. In particular, while the authors agree direct physician input is preferable they recognize this may not always be possible or feasible, and suggest computer resources as a viable alternative. They explain that such "a superior patient education system emulates good doctor-patient communication through individualization at the level of both the patient and the doctor...it responds to the particular needs of individual patients, and it also accommodates the particular preferences of individual clinicians." For purposes of discussion, they divide computerized patient education systems into two groups: non-interactive systems such as computer-generated patient handouts, and patient-interactive systems, with interaction controlled by the patient or by the computer (server/Web site) using predefined rules. Note that their concluding guidelines are as appropriate for patient education resources on the Web as they are for software.

On the Web most patient education is non-interactive, and primarily text-based. Sources include articles from journals or newsletters, chapters from books, and specifically created writings. Non-interactive patient education resources have several advantages, including a relatively low cost and a sense of anonymity that sensitive or private users find appealing.

Interactive patient education resources are most commonly found on health megasites, where expert Q&As and bulletin boards are housed among non-interactive educational articles, references, and health news. Other forms of interactivity include freestanding online consultations, listservs, and chat groups.

In coming years health care professionals should anticipate the development of more sophisticated Web technologies that allow for a personalized yet confidential transfer of information. Even today, several isolated examples can be found. Insulin-dependent diabetics and their caretakers can download the fourth version of AIDA, a simulator responsive to insulin and dietary input from UK’s The Diabetic Organization; an abstract of an article on AIDA published in the May 1998 issue of Computer Methods and Programs in Biomedicine is on line. A new site feature is AIDA Online, which provides a patient simulation of blood glucose levels in response to changing short-acting and intermediate insulin dosages in an adult diabetic. The University of Virginia’s Asthma Tutorial for Children and Parents is a very basic educational resource that uses audio in addition to text and graphics.

Patient education sites are created and maintained with varying amounts of altruism, desire for personal and professional kudos, concern for and/or manipulation of the public, marketing and self-promotion, venting personal anger over perceived medical mismanagement, and sharing personal journeys with others in a similar predicament. Well-known medical institutions, government, and organizations tend to be among the most trusted resources, deservedly or not. Not surprisingly, an increasing number of health information sites come from commercial sources.

Included in this article are examples from among the more reputable patient education sites; the vast number of online resources and the need for individual physician judgment preclude a more authoritative or comprehensive survey. Once familiar with what’s available on line for their patients, some may wish to print out information or post/link material on their professional Web sites, personalizing the information as one would any computer-generated patient handout or article. Sites vary, particularly the commercial ones, but even noncommercial educational materials request that persons who repost or reprint them acknowledge the original author, source, and dates of original and amended material.

Those eager to increase their understanding of the Web’s role in patient education will appreciate Karen Bleeck, MD’s Working with the Internet-literate Patient (click on "Internet" to get this and other articles).

Sections Present Limitations

A number of studies document the problems inherent in using Web technology to educate patients, some of which are published or abstracted on the Web. The authors of an article in June 28, 1997, issue of British Medical Journal, Reliability of health information for the public on the World Wide Web: systematic survey of advice on managing fever in children at home, found that only a handful of 41 sites provided complete and accurate information. More disturbing, a study out of Ohio State University and published in the June 1998 Pediatrics, The Internet as a source for current patient information, discovered that only a fifth of 60 articles from traditional medical sources (hospitals, medical schools, etc.) conformed to AAP’s guidelines for acute management of gastroenteritis in young children. Assuming these guidelines are the gold standard, the study’s implications are relevant not only to patient education, but serve as a warning to our most authoritative resources regarding the quality of information published on their Web sites. More recent studies affirm these concerns: Quality of medical information about menorrhagia on the worldwide web from the January 2000 issue of British Journal of Obstetrics and Gynecology found that none of nine sites on heavy menstrual bleeding met the study's critera for quality patient information, and during the same month Pediatrics published Parents on the Web: Risks for Quality Management of Cough in Children, which gave high score to only one of 19 Web pages. No relationship was found among quality of information, technical aspect, and content completeness.

But none of this may matter, the abstract of a 1997 University of Alabama study published in Journal of Cancer Education, The effects of the PDQ patient information file (PIF) on patients' knowledge, enrollment in clinical trials, and satisfaction, seems to suggest. In comparing one group of patients with cancer who received verbal instruction with another that received in addition a PDQ file (from NCI’s popular Cancernet Web site), the researchers found both groups lacked basic knowledge about their disease, neither used any source of information other than what their physicians and/or nurses told them, and all were satisfied with the information they received. Managers interested in improving patient satisfaction should note that the latter group did appreciate the additional information.

See too the International Journal of Medical Informatics’ June 1998 issue for The current and future role of the Internet in patient education, and Academic Medicine’s April 1998 issue for "Patient informatics": creating new partnerships in medical decision making, both of which are abstracted with full citations on line. These articles address not only quality issues but those of confidentiality, future technologies, and changes in medical practice in response to patient activity on the Web.

Not all studies on patient education on the Web are negative. For example, Hogne Sandvik, a general practitioner with Norway's Department of Public Health and Primary Health Care, was generally satisfied with his review of 75 Web sites on urinary incontinence, although he noted that only a few sites provided comprehensive information and there was no relation between the site's popularity or number of links, and quality. His Health Care and interaction on the Internet: a survey of female urinary incontinence, from July 1990 issue of British Medical Journal, includes correspondences to the author about this and related studies, and his replies.

Most physicians are sensitive to the need of individualizing educational materials to a patient's literacy level and disabilities. A study from the November 1999 issue of BMJ underscores the importance of individualizing the instructional content to the patient as well. Researchers at the University of Glasglow reported in Randomized trial of personalized computer based information for cancer patients that their patients were more impressed with, and more likely to use, touch screen computerized information that was personalized to them over either generic computer or written information. This study found such systems to be the most cost-effective as well, assuming electronic medical records was integrated with the patient education program.

One suggested method for decreasing misinformation without evoking censorship is to rate or rank Web sites, and there are many groups vying for leadership in this area. For example, the Criteria for Assessing the Quality of Health Information on the Internet is a multi-authored white paper sponsored by several government and specialty organizations. It spells out these rating criteria and updates their progress. UK’s OMNI, a selective reference of biomedical Web sites, shares its Guidelines for Resource Evaluation. The well-respected Health on the Net (HON) Foundation offers another solution: a small graphic on the home pages of Web sites that voluntarily support HONcode. Four articles in November 1998 issue of British Medical Journal address the issue of quality information on the Web. However, there is no evidence supporting the utility of ratings or voluntary criteria, and in an article published in the February 25, 1998, issue of JAMA, Rating health information on the Internet: navigating to knowledge or to Babel?, Alejandro R. Jadad, MD, found no well developed tools for evaluating health sites at the time of his search.

A new Web phenomenon suggests another alternative for improving accuracy of health information: online consultations. Sweden’s Karolinska Institute’s Ask the Doctor and Second Opinion Online Services and LookSmart’s Health & Fitness - Online Consultations list hundreds of physicians and organizations that advise patients, freely or for a fee, individually or in groups (chat), or by posting reader questions on their site with their answers. Probably the best known site of this kind is Ask Dr. Weil, although in practice it has more in common with the corporate sites discussed below. Overt self-promotion varies, but in the end patients browsing the Web have no greater assurance that these more personalized forms of communication are any more accurate or germane. Those who have registered (free) for The Lancet can read the full text Research Letter: Evaluation of Cyberdocs from its November 7, 1998 issue, where an email describing an obvious diagnosis of herpes zoster yielded mixed results from both from free and charging cyberdocs. Note that these online consultations should not be confused with telecommunications projects operating within already established doctor-patient relationships, such as Medical College of Georgia/Georgia Institute of Technology’s The Electronic House Call Project.

Sections Medical Institutions

Several medical institutions, hospitals, and HMOs provide patient education megasites within a commercial or self-promotion context. The most popular of these include Mayo Clinic’s Health Oasis and Johns Hopkins InteliHealth. The medical centers at Case Western Reserve and Ohio State University contribute to the University of Cincinnati’s NetWellness megasite. Less expansive sites include the University of Virginia Health Science Center’s Patient Education.

Some institutions are associated with collections of patient education articles, such as the electronic version of Harvard Health, Heart, Mental Health, Women’s, and Men’s Health Letters or the University of Washington’s HealthBeat Articles, the latter written by staff of the Health Sciences Medical Affairs News and Community Relations in collaboration with Health Sciences Center faculty. A few medical centers showcase their specialty strengths to the public, such as the well-respected University of Pennsylvania’s Oncolink.

New York City’s Continuum Health Partners’s We Heal New York maintains information while promoting their affiliated teaching hospitals. Seattle-based Group Health is the nation’s largest consumer-governed HMO. Kaiser-Permanente’s To Your Health offers some online information along with its own webzine.

Sections Organizations

Virtually every medical specialty and health organization has online resources for patients. Access these organizations using medical search engines, categorization sites, or specialty lists (see Lists of Lists below).

AMA’s Health Insight is a Java-scripted megasite with articles on general and specific conditions, wellness, and interactivity. The AMA also sponsors the JAMA Information Centers on HIV/AIDS, Asthma, Migraine, and Women’s Health, and the JAMA Patient Pages; see the JAMA editorial, which explains the origin and goals of these pages.

Other organizations include the AAFP, with its popular Information From Your Family Doctor; the American Association of Neurological Surgeons and the College of Neurological Surgeons, which maintain Neurosurgery Public Pages; and the American Academy of Pediatrics, which maintains You and Your Family.

The American Heart Association site contains patient-oriented articles on heart and stroke, and a corporate-sponsored wellness section. Comparable material can be found at the American Lung Association Web site.

Sections Government

Healthfinder is the highly regarded one-stop search site providing access to most government information for the public. A new section offers its own health and wellness information. Agency for Health Care Policy and Research Consumer Health posts clinical information for "consumers." Nineteen older AHCPR consumer guides in English and Spanish can be accessed from NIH’s Health Services/Technology Assessment Text site. Combined Health Information Database is 18 searchable government databases listing brochures, books, articles, fact sheets, organizations, and hard-to-find educational materials on a variety of disorders, most of which are off line.

Other frequently cited sites include NCI’s CancerNet, CDC’s ABCs of Safe and Healthy Child Care, NIH’s National Institute of Diabetes and Digestive and Kidney Diseases Patient Information, and the CDC National AIDS Clearinghouse.

Sections Collaborations

HealthAnswers contains its own database of disorders, but noteworthy too is its list of patient resources under Health Organizations, such as clinical and support information from AAFP, AAP, Older Adult Resource Center, and National Transplant Society. Colorado Healthnet is a nonprofit organization representing both academic centers and industry.

Wellness Web, a "patients’ network" advocacy group of patients, health care professionals, and other caregivers, includes up-to-date referenced information on conventional medicine, alternative medicine, and nutrition, with an emphasis on new research. While the core material appears independent of bias, scattered throughout are associations with for-profit groups and corporations.

Sections Corporations

Commercial patient health megasites already populate the Web, and their numbers are increasing. Mediconsult.com, a consumer health marketing company, fills its well-designed Web megasite with health information and moderated support groups. ThriveOnline is maintained by the editors of Time and AOL; its Health Library has a large searchable database. BeWELL.com by HealthGate gathers together a group of Healthy Living electronic magazines. The newly redesigned OnHealth.com is the electronic sister of HealthNews, a patient newsletter by the publishers of NEJM. Some of its articles are written by nationally known physicians, but its "Conditions A-Z" carries outdated and unbalanced information. Among Health Access’ YourHealth.com offerings is an easy-to-use version of MDX Health Digest, an Excite search engine of health articles from newspapers and magazines. Both MedicineNet and NetMedicine advertise articles written by physicians or medical organizations. Medscape Patient Information articles link to other resources from throughout the Internet.

Dr. Koop’s Community, part of his Empower Health initiative, whose "¼ objectives are to become the leading new-media organization for direct-to-consumer healthcare information and electronic commerce, and to become the standard for connecting consumers with major software applications used by the healthcare industry," is a megasite that fits more appropriately in this category than the one below.

Sections Physicians/Groups

Individual and group physician sites cover the spectrum from laudable to offensive; several examples of the former are included here. Phillip Long, MD’s well respected Internet Mental Health is a collection of American and European diagnostic criteria, along with links to mainstream resources on line. Michael Tobin, MD, PhD’s Patient Education in Nuclear Medicine uses a multi-frames format to provide basic information for patients on nuclear scans and therapies. Greater Houston Anesthesiology is maintained by local anesthesiologists with basic information addressing patients’ questions and concerns.

Sections Other (handouts, online texts)

Most of the above sites have articles or fact sheets that can be used by physicians as patient handouts. However, several sites seem especially designed for this purpose. HealthTouch Online is a popular site that obtains its information from dozens of medical organizations and government; see Health Resource Directory for a list of its sources. See too the American Family Physician handouts; NetMedicine’s Patient Education Center; Louisiana State University Patient Education, which includes handouts for lower literacy patients; NIH’s National Institute of Aging’s Age Pages, which contains about two dozen fact pages and has many more on the way; National Organization of Rare Diseases’ searchable database of information sheets; International Food Information Council Foundation - Adult and Children/Adolescent Eating; Medical College of Wisconsin’s Travel Health Information, and HealthGate’s physician-written Diagnostic Procedures. RxMED presents itself as a peer-reviewed site for physicians that offers, among other things, hundreds of patient education handouts.

Physicians should be aware that many patients consult texts that are freely available on line, such as Columbia-Presbyterian’s Complete Home Medical Guide; Virtual Hospital’s Iowa Health Book, AHA’s Heart and Stroke Guide A -Z, and the 1992 Merck Manual.

Sections Lists of Lists and Reviews

One of the best ways -- and sometimes the only way -- to locate patient education resources is to scan medical megalists. G.S. Nace, MD’s Patient Education Material is one such enormous list. North Memorial Health Care’s Selective List and MedNet Links - Patient Education are both fully annotated, the latter especially valuable for its insurance and HMO patient sites. University of Washington Health Links lists resources from UWash and elsewhere on the Web. Medical Matrix’s Patient Education, Patient Handouts, and MedWeb - Consumer Health all list patient education sites; ignore the subtitles and peruse them all.

The English/Spanish New York Online Access to Health (NOAH) is a project of the City University of New York, the Metropolitan New York Library Council, the New York Academy of Medicine and the New York Public Library, all of whose librarians create and maintain links to health resources throughout the Web. As one would expect from librarians, the user-friendly site is impeccably catalogued.

The Comparison of Health Information Megasites Full list provides access to virtually all major medical and health information categorization and search engine sites, any of which can be used to locate patient education sites. Centerwatch Resources for Patients and Patient Advocates is divided into specialties; scroll down the page for listings of all specialties. National Organization of Rare Diseases links to about two dozen "sites of the week" from 1997.

Labor-of-love sites created by patients or families are sometimes among the most informative and well-maintained megalists. Two of the best are Granny Barb and Art’s Leukemia Links and MS Crossroads.

Kansas University Medical Center, home of several elegant sites, has created yet another this one for patients and consumers seeking Web resources. Bluestem was created to "help with the health of individual Kansans in the way that the Big Bluestem helps maintain the health of the prairie on which Kansas towns and cities are built." Sites are listed by topic or located via a search engine, and each site is accompanied by a generous description. Other review sites include Dr. Koop’s Health Site Review and Tufts University Nutrition Navigator.

Sections Support Services

Many general health information resources on the Web are not "patient education sites" but resources for information and support services to groups of patients sharing the same disease or condition. The National Health Council links to hundreds of health and disease organizations. The Health Information Resource Database includes names, addresses, and — for most — Web site locations for 1,100 organizations and government offices that provide health information upon request. See too its Federal Health Information Centers and Clearinghouses.

A number of specific conditions are well-supported on line. Disabled patients and their families will find National Rehabilitation Information Center (NARIC) an information-intensive database. It’s a good first start for information on a host of conditions, and on more general lifestyle and medical considerations. One nice feature is a journal delivery service for a reasonable xeroxing and shipping charge (minimum $5). RehabNet is another megasite; see Links for support groups and information on disabilities, or peruse a list of Organizations from the National Health Information Center. The Boulevard is "a healthcare site for the disabled by the disabled" with links to products and services, among other information and interactivity. On Target is a disabilities newsletter from New York State’s Department of Health. University of Wisconsin’s Family Village includes resources for mental retardation among other disabilities.

Patients on special diets will find lots of nutrition and food information on the Web. Menus For You is a corporation whose Web site is a searchable archive for thousands of recipes, particularly useful for those on limited diets. Another commercial site, CyberDiet, contains free and fee-based diet information and nutritional information on thousands of foods. Jean Fremont, RD, of Simon Frasier University lists other Nutrition and Food User Friendly Sites, and Tufts University Nutrition Navigator lists, describes, and rates nutrition sites.

HHS’ Administration on Aging Elderpage is a huge scrollable megalist of sites and resources a wonderful resource that includes articles not just for the aged, such as Seven memory exercises that will work for you.

National Clearinghouse for Alcohol and Drug Information supplies resources and information, mostly about alcohol but also some recreational drugs as well. See too the popular Web of Addictions, irregularly maintained by Andrew Homer, PhD.

Several unique patient resources include CenterWatch Clinical Trials Listing Service, which lists open clinical trials; Rich Sagall, MD’s site dedicated to Pharmaceutical Manufacturer's Drug Assistance Programs, Needy Meds; and CDC Travel Information with health information for international travelers.

Finally, the Web excels in disseminating news information quickly and cheaply, including health news, and many patients need or enjoy this feature. Select among the health news sites listed in June 1998’s Medical Software Reviews for general public or selected groups of patients. Specialty organizations often provide their own news updates, including information on clinical trials, research, and newly approved therapies; to locate them, use the specialty references listed above or included under Lists of Lists.

Sections Support Groups

Many physicians appreciate the practical and emotional benefits support groups provide selected patients, and believe the benefits outweigh the potential misinformation such groups sometimes produce. Web support groups share these same characteristics as their real life counterparts, but add critically important features such as convenience (in terms of eliminating travel hassles and time commitments) and low cost. A rare disease that affects only a handful in a city or state can amount to hundreds of online participants from around the world. Some groups are moderated by experts or laypersons, while others enjoy the unofficial participation of health professionals. Sadly, a few use their pooled ignorance as virtual sustenance. Physicians not familiar with online lists and groups can reference JAMA NetSight’s Digital Dialogue.

To locate Web groups, peruse the extensive list of health discussion (e-mail) lists and health newsgroups . For specific disorders or conditions, Tile.net’s home page contains a search engine to access all lists and newsgroups. NOAH categorizes Disabilities Discussion Groups.

Examples from among the hundreds of online support services demonstrate their unique features. ConvoNation is an "Internet community of sick and disabled young people sharing their experiences"; it sponsors a 24-hour Java chat room and e-mail list. Samantha Scolamiero maintains Brain Tumor Listserv, one of the oldest and best known lists, for patients and family members with primary brain tumors -- and she has written several articles for M.D. Computing, the most recent of which, published this past March, is titled "Why patients ride the information highway." Finally, November 1997’s NetView includes a group of Multiple Sclerosis Patient Education Resources, and advertising supported Stork Site is a popular site supporting pregnant women and new parents.


1 Michael Brown, a partner in
Interactive Solutions Inc., which develops strategies for the Internet, provided these statistics to Healthfinder, a government Web site. Return to article
 
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