- Email: [email protected]
Part I. Patient education
Part I. Patient Education Thomas
Dent, MD
B 0
atient education has not historically been a topic of great interest to many physicians. There are several reasons why patient education did not attract much attention from physicians; these include the following: l
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Patient education has not been perceived as reflecting a great cognitive challenge to the physician, and it certainly is not procedural. Much of the literature in patient education falls outside the traditional medical journals. Much patient education has been assigned to nurses or other nonphysician health care providers. There is poor to no reimbursement for most patient education. Patient education as a separate issue is viewed as superfluous by some physicians who believe they effectively incorporate it into their office visits or who believe that patient obedience is more important than patient understanding.
A brilliant diagnosis and therapeutic plan are of little value if the patient does not understand the importance of taking the prescribed medication or takes it inappropriately. Similarly, missed preventive services resulting from inadequate or ineffective education will lower the quality of care provided. An excellent surgeon operating on a Duke’s class C colon cancer will not provide as good an outcome as a more average surgeon dealing with a class A tumor that was discovered through the patient’s understanding and participating in the distasteful screening tests. The topic of patient education is remarkably different than what it was when I entered practice 20 years ago. Indeed it is increasingly difficult to get a handle on what patient education means, both now and further into the twenty-first century. It may seem like a niggling and superficial issue to worry about definitions or meaning; however, when “education” is used to drive medical outcomes, sway public opinion, or enhance selected medical economic interests, then it bears some scrutiny. For the DM,
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2000
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purposeof this article, patient education will encompassall efforts or processesto provide medical information, instructions, or opinions; modify the behavioror healthcarebeliefs of patientsand,hence,medical outcomes;or influencehealth caredecision-makingby patients.It should be recognized that these efforts might augment, diminish, or replace important elements of the physician-patient relationship. I will not discussinpatient educationof patients by nursing staff. This article will focus more on physician efforts in patient education, because it is directed to a physician audience.With educational topics for patients being the mainstay of “content” for many medical web sites, it is now a major areaof interest for physicians. Traditional Approaches In the pre-Internet epoch, patients were “educated” by physicians generally in one of the following manners: Direct face-to-faceinteractions.Much suchcommunication was and is unidirectional (ie, physician to patient). This remains the gold standardbut is under fire becausephysicians havediminishing time to spenddirectly with patients (being more productively put to use calling health maintenance organizations,utilization management firms, and like-minded administrative sorts).The skill of individual physicians in providing emotional support and meaning in addition to factual information will remain as a crucial ingredientin the art of the practiceof medicine. The basic necessityof listening carefully to the verbal and nonverbalinput from patients is also vital to structuring what and how the patient should receive certain information. A major limitation to the provision of information in this manneris the often-underestimatedemotion experiencedby patients in these encounters.This can serveas an effective filter to some of the subtle or evennot-so-subtlepoints the physician is trying to convey.Patient embarrassment,a physician’s lack of awarenessof cultural cues,and physician presentationcharacteristics(eg, disinterest,aloofness,use of complicated medical phraseology)may also derail a well-meaning and articulatediscourse. Written handouts.To many physicians thesewritten descriptionsor explanationsof different medical diagnosesor conditionsremain the essenceof patient education.Provided gratisby pharmaceuticalfirms or extractedfrom medical journals, thesehandoutshaveand continue to be valuable to physicians and patients.Often plainly written and well illustrated, they provide a good adjunct to physicians’ explanal
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tions and exhortations. The amassing, cataloging, and replenishment of this written material may be challenging for a busy physician providing care to patients with a multitude of medical problems. Telephony. Telephone conversations with patients are a very personal form of interaction, akin to face-to-face meetings. This is a timehonored way of providing education and information to patients. It most often occurs in response to patient inquiries or in follow-up to diagnostic tests and procedures. Lacking visual cues, the content of the conversation is of heightened importance and can lead to egregious miscommunication. As a tool to improve return visits to the physician, increase adherence to drug regimens, and provide instruction in management of chronic diseases, telephony has good potential.’ Drug inserts, surgical release/patient consent forms. Carefully crafted with legal liability their focus and purpose, these are necessary tools of our overly litigious society. To achieve comprehensiveness, they are often written for other attorneys rather than patients or physicians. These are excellent examples of how process may occur without fundamental meaning. There are current efforts to enhance patient understanding in this area.2T3 Group meetings. Alcoholics Anonymous provides an example of how health behavior (in this case abstinence from alcohol) was and is influenced by a group support model and some firm/rigid principles (ie, 12-step process). The value of group meetings has been overlooked. The development of chat rooms for individuals aligned by diseases, complaints, or fear is a new development in this process, which will be discussed later.
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When
Is Patient Education
Effective?
In spite of medical advances, much morbidity and death result from the actions or inaction of the patient.” From personal health habits (eg, diet, smoking, exercise) to following preventive services (eg, mammography, screening for colorectal cancer. pap smears) to adhering to medication regimens, the impact on individual health and societal health care costs is substantial.5,6 Patient education is valuable when it has an impact on these areas. The mere provision of the instruction is of marginal value if it has no impact on the patient or the patient’s family. The issue then becomes what works and what satisfies the needs of the patient? Patient education interventions have shown stronger benefits in patients with a particular condition (such as diabetes, asthma, or hypertension).’ When the patient seeks the information, then it is more likely that the l
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patient will be receptiveto an educationalmessage.There are some caveatsto this, becausethe information has to be educationally and culturally appropriateaswell. However,for a patient to be motivated to learn, he/she must recognize a need for the information and be ready to receive it both physically and mentally, as well as have a receptiveattitude.8 When patients are exposed to a variety of different teaching approaches,interventionsare more effective.A largemetaanalysisof interventions to improve patient compliance found comprehensive educationalapproachesare more effective in enhancingoutcomes. This includes programswith combined educational,behavioral,and affective components.The educational component reflected verbal or written teachinginterventionswith a knowledge-basedemphasis. The behavioral interventions focused on shaping or reinforcing specific behavioral patterns.The affective category used appealsto emotions, attitudes,social relationships, and social supports.When education interventions used multiple strategies (eg, one-on-one education of patients, group education, or written and audiovisual materials), this was also more likely to be of benefit. Utilization outcomes were more influenced by education versus behavioral interventions; however,utilization in the cited studiesconsisted of making and keeping offtce appointments and use of preventive services (pap smears, mammography, vaccination, and colorectal cancerscreening).Telephoneeducationwas found to be particularly effective, and group educationproducedmoderately strongeffects.7 When patient education is customized for the patient, it is more likely to be effective. During an offtce visit the physician can personalize the messagedramatically by tying it to the patient’s physical or laboratoryfindings (eg, dry lung cracklesin the smoker,left ventricular hypertrophyin the patient with hypertension).This is obviously limited to certain conditions.A study of physical activity counseling supportedthe use of counseling,which was tailored to the patient’s motivation, and was more effective when patientsreceiveda greater number of counseling messages.9There are now web sites that attempt to personalize patient education through analysis of the patient’s responsesto a questionnaire.‘O Approacheswith self-monitoring (eg, exerciselogs or diet diaries) seemto be effective for smoking and alcohol abuseand for nutrition and weight control.l1 A self-managementprogram for a heterogeneous group of patients with chronic diseasewas found to result in
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improved health behaviors (eg, minutes spent exercising per week) and health status (eg, fatigue and disability) and fewer hospitalizations and days of hospitalization.‘*
Problems
in Patient Education
Several factors can subvert the process of patient education. Some examples are as follow: Mixed messages. Recently a patient had to have both a colonoscopy and esophagogastroduodenoscopy. The patient was given two different handouts, each one describing how to prepare for one of the two procedures. The problem was that the patient was undergoing the two procedures together under intravenous anesthesia, and the handouts had conflicting instructions on how to prepare for the endoscopies. For the esophagogastroduodenoscopy the patient was to receive nothing by mouth after midnight, and for the colonoscopy the patient was to ingest the second phosphosoda preparation the morning of the procedures. The end result was a confused patient who had to call the office for clarification; a worse outcome could have been a patient poorly prepared and unable to undergo the procedures. The problem of mixed messages extends beyond factual information. The physician may convey a less- or more-concerned attitude toward a problem than the patient education material. This will confuse the patient and bring into question the validity of either the physician’s advice or the education material, or more likely both of them. Subtler are the conflicting recommendations and advice people are receiving on the Internet. Patient education with a mission, over-the-top material. Populating the Internet are sites devoted to specific disease states, therapies, or health belief systems. Some of these sites are convincing and well designed, but they propose remedies that are useless or potentially dangerous for patients. The motives are varied, ranging from simple avarice to near-fanatic groups bound by a rejection of the medical establishment. This can be very confusing for patients. To address this among other issues with Internet health sites, the American Medical Association has recently published guidelines for medical and health information sites on the Intemet.13 Misleading web sites will always have a niche because the natural change in recommendations that occurs as research reveals new answers is disconcerting to some patients. The scientific method may not be well appreciated by frustrated and fearful patients seeking advice and direction. More l
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than at any time in the past, physicians must recognize that their patients will be coming to their offices with highly varied understandings of their health and disease conditions. Direct-to-consumer advertising. Some pharmaceutical companies have discovered the financially salutary effect of advertising directly to patients. This most often takes the form of a mass media effort to inform the public of the value of treating the condition for which the pharmaceutical is prescribed. When used to increase influenza vaccination in vulnerable populations, then the message of the advertising will coincide with physicians’ recommendations. Conversely, when advertisements encourage patients to-ask their physician to prescribe an expensive third-generation antibiotic for pharyngitis, then the direct-to-consumer advertising becomes solely a vehicle for profit instead of a benefit to patients. This activity then has the potential to undermine the value in having the patient be active and responsible for his/her own health care. l4 Scare tactics. There is a strong temptation with certain patients to graphically detail the consequences of a behavior or the failure to adhere to a medical regimen. The physician may believe this is necessary to grab the patient’s attention or simply that the patient needs to be fully informed of the consequences of his/her actions or inaction. The problem with this approach is that fear as the main basis for changing behavior does not have a lasting effect for many patients. If the patient becomes sufficiently anxious to impair the ability to learn or even goes into denial, then ironically the patient will not hear any other message from the physician.* This is not to say the physician should not attempt to create some concern in selected patients. As an example the physician who unambiguously articulates that a patient should cease alcohol consumption because of present and future complications may create a reverberating effect of making the patient uncomfortable with future heavy or binge drinking. I have seen this cause alcoholic patients to “bottom-out” at a much higher level than expected. As with many elements of the physician-patient encounter, moderation in describing adverse outcomes is preferred. Literacy issues are major factors in detracting from some patient education efforts; this is addressed in Dr. Vanderberg’s article in this issue.
What Makes
Patient Education
Work
Every encounter with a physician or an office staff member is an opportunity for patient education. Unfortunately, much necessary and
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valuable information, instruction, and reassurance are not provided to all of the patients in the physician’s practice. Newsletters are a means for a physician to communicate broadly to a large segment of the patients in the practice. The difficulty with newsletters is the time, effort, and expense necessary to keep them produced and distributed in a timely and ongoing manner. Even when the patient does see the physician, the recognition that an individual patient needs help in understanding a disease process or the necessity for treatment or prevention is not always clear. Preventive and long-term care typically requires more patient education. If the physician’s practice is mainly geared toward acute care (as many primary care practices are), then efforts to change behavior versus providing factual information are going to be more challenging. Falvo8 describes this process as a series of steps in which data about the patient are gathered and assessed to develop a plan for education, which is then implemented and its effectiveness evaluated. Although this process may seem daunting, if well organized it can occur in a relatively quick and efficient fashion. Factors that facilitate this process include the following: A highly organized medical record. When the physician is able to readily track the medical services provided to the patient and those that are due to be performed, it is easier to determine when preventive and long-term care have deviated from the anticipated pattern. For a chronic disease, it is important to query the patient regularly regarding the presence of certain manifestations of the disease (eg, in diabetes symptoms of neuropathy), side effects of medication (eg, erectile dysfunction from beta blockers for treatment of hypertension), or whether the patient is regularly checking the status of the disease (eg, peak flow measurements in patients with asthma or finger-stick blood sugar measurements in diabetic patients). Too frequently the physician will overlook an important question because of disorganization rather than a lack of medical knowledge or awareness. If the physician stresses the importance of properly trimming toenails to diabetic patients but doesn’t cneck the patient’s feet during the office visit. the patient will be getting a double message. Indeed regular office visits allow the physician to assess the patient education provided. Chronic disease and preventive care management are improved when the patient regularly returns for office visits.r5 Reminders, either by mail or telephone, have had a modest effect of increasing the number of health maintenance visits and the provision of prevenl
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tive services.16 This level of administrative organization is presently uncommon in most physician offices. Use of other health care educators as part of a team. The use of such teams based around a patient is not new; it has been a regular part of rehabilitation programs for years, but it is now pushing to the forefront in the management of numerous chronic diseases. Given the constraints of office practice for most physicians, the use of dietitians, nurse educators, and social workers (to name a few examples) is a necessity. The use of teams of different health care providers to provide the necessary depth of ongoing education and support for these patients is associated with better control of blood sugars for diabetes.17T18 Preparation of the patient as a decision-maker for his/her health care needs. If the patient assumes responsibility for his/her own health care behavior, then the physician’s job is potentially more efficient. Patient data can be organized before the office visit, along with specific questions and concerns. The patient, at his/her level of understanding, can direct the tailoring of patient education in this circumstance. The patient develops a progressively more sophisticated cognitive understanding of his/her medical condition and needs. To be so prepared, the patient will need to feel free to ask questions easily, be motivated to become more responsible, and not have psychosocial impediments to becoming such a decision-maker. For some patients being able to ask medical questions is impeded by the embarrassment of appearing foolish or not wishing to impose on the physician. Hopelessness, denial, and anger will also block any effort to have the patient become more responsible. The physician must spot and address these attitudes before effective patient education may proceed. In 1970 a program called the Course for Activated Patients was started that enrolled patients with the following objectives: to accept more responsibility for their own care; learn skills of observation, description, and handling of common illnesses, injuries, and emergencies; increase basic knowledge about health; learn how to make economical use of health care resources.19 Thirty years later these concepts are still relevant. The physician having sufficient time, motivation, and inclination to use patient education as a tool for improved outcomes. A core problem in patient education is the relentless need to increase physician productivity, combined with no or little additional reimbursement for patient education. Physicians as conscientious professionals will do their best to educate their patients; but with less office time
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allowed for patient contact, this will be progressively more difficult. If physicians do not try to educate their patients (or direct patients to respected and ethical web sites), more and more Internet sites will fill that role in a disconnected manner from their physician. The physician will then have to spend a substantial amount of time trying to sort out the value and validity of the online material patients will bring to the office or discuss over the telephone.
Future Directions in Patient Education The single greatest factor influencing the future of patient education is the Internet. The pace of activity in this area is so fast that even in the brief time from the completion of this article until its publication, significant changes are likely to have occurred. Linked with the Internet are rapid developments in telecommunication. Interestingly most of the development has been on the consumer/patient side; physician’s offices largely have not been quick to use the Internet. However. patients have ranked information from their own physician’s office as being the most desirable type of online health information.20 This is a very interesting finding. It may well reflect the need for the patient to be able to put an isolated item or fact into the context of the general advice received from the physician. Patients hear so many conflicting medical sound bytes; a measure of continuity and personal linkage may be more meaningful to patients than is often recognized. E-mail There are good reasons why physicians should proceed cautiously in this area. The Table is a general checklist for physicians considering using the Internet for communicating with their patients or handling electronic patient data. Failure to answer patients’ e-mail correspondence in a timely manner may open the physician to legal liability if a patient suffers some injury as a result of a delay. Also patients should always be directed to an answering service for emergencies. Encryption of patientphysician communication is essential; however, a greater security issue may arise in the physician’s office if access to this form of communication is not limited. A disgruntled employee could communicate improperly to patients under the physician’s name. Patients should also be warned that any e-mail sent from their workplace can and often is scrutinized by more senior management. It is at present unclear to what extent the physician has an obligation to retain e-mails as a part of the medical records and whether there is a need to obtain the patient’s
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TABLE.
Checklist
for physicians
using the Internet
Is your email read frequently? Are your patients clearly instructed not to contact you for emergencies through email? Is your email secure? Do you have the administrative resources to handle another avenue of communication? Are you comfortable with the fact that any communication with email is open to later scrutiny?
consent for the transfer or forwarding of this information (this would appearlikely). *l Also if the implementation of e-mail communication with patients is not part of a broadereffort toward the developmentof automatedprocessesin the office (eg,an electronicmedical record,automated scheduling,electronic referrals,and prescriptions),then thereis a risk that it will not be handled securelyand effectively.
Commercialsand Sponsorships Information for patients is plentiful on the Internet. Most of the larger sites do not charge for the information. It should also be noted there is much good physician information at the larger more reputable sites. The revenue source for most of these web sites is transactions such as sales of pharmaceuticals,provision of services such as physician billing, advertising, or directing patients to companies recruiting for researchprograms. Corporate sponsorshipof sites is also a source of revenue. Drug companies are the main source of these sponsorships, and the sites sponsoredusually deal with the diseasesintegral to their business.
Chat Rooms One feature of the Internet, which may be quite influential for some patients, is the chat room. This is a version of the group sessions previously mentioned. Patients may benefit from understanding how other people with similar medical problems are dealing with their condition. The anonymity of these groups can create problems, with participants misrepresenting themselves. There needs to be knowledgeable leadership of these chat rooms, which might not occur if they are “open” 24 hours a day. The use of more organized virtual support groups, with a definite scheduled leader and time frame, is more likely to benefit patients. The use of groups is important as a means of making patient education more cost effective, maximizing the impact of the educator.
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Security
and Confident&y
As a consequence of the Health Insurance Portability and Accountability Act of 1996, the Department of Health and Human Services will shortly be finalizing rules related to ensuring the security of patient medical information transmitted electronically. A key issue is the obtaining of a release from the patient for the use or transmittal of this information. This will have a major impact on sites receiving patient-specific data. This is a potentially valuable source of data to many parties; however, it is most likely going to require specific patient approval for every different use. Additionally, although some sites are offering medical advice, most will steer clear of anything that looks like they are engaged in the practice of medicine. This is because of unclear and potentially high-risk liability concerns and licensure coverage for each state in which involved patients reside. Other
Technology
The use of television, particularly when linked in to the web, will offer a number of additional methods for patient education. Patients will be able to see how certain procedures should be performed (eg, changing a colostomy bag or performing a finger-stick blood sugar test). If a camera is attached to the computer or web-enabled television, then physicians and nurses will be able to conduct interactive educational sessions. An intermediate technology presently in use consists of a unit that plugs into the patient’s telephone line and allows the patient to answer a set of questions posed by a nurse. The response consists of pressing one of four buttons on the screen. The unit from Hero Health Network called the Health Buddy0 has had its greatest use with diabetic patients. This is a clever interactive tool to case manage some chronic disease states. Computer-assisted education has been used with some efficacy fo: several years. Occasionally units have been placed in physicians’ off-ices, or patients have used a telephone to work their way through a series of prompts. Office units face a problem with space limitations in many waiting rooms and potentially with interfering with the scheduling and flow of patients through the office. A kiosk has been used to provide the patient with greater privacy in this setting.
Final Observations The value and importance of patient education have achieved a high point of prominence with the widespread use of the Internet. The Internet is popular with patients because it provides ready access to those who are seeking medical information. Unfortunately a number of patients who
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really needthe information arenot seekingit out andmost importantly are not incorporatingit into a changein behavior.The impersonalnatureof seekinginformation on the Internet is a benefit for patientswho want to gain a generalunderstandingof their medical problemswithout having to exposeeithertheir ignoranceor curiosity.As was mentionedpreviously in this article, most patientswhen questioneddo want medical information recommendedby their physician, which reflects an additional need to havea more personalattachmentto the information and an opportunity to review the educationalmaterial with their personalphysician. The empowered,responsiblepatient is a desirablegoal. From a patient education standpoint, however, some patients with the easy accessto information provided by the Internetbecomeinsecureandoverwhelmed. The physician will needto be particularly patient with theseindividuals, becausetheir motivation to learn and assumeresponsibility can be quite beneficial if properly focused. Economic issuesareimportant in this changingpatient educationenvironment, and not only with regard to the Internet. Managed care has certainly attemptedto usepatienteducationto hold down healthcarecosts. It should be noted that for many preventiveservices,the managedcare companywould not likely benefit much financially from the betterhealth of patientsuntil decadesin the future,but for accreditationpurposesdocumentation of patient educationhas beenviewed as necessary.The establishment of reasonablepatientexpectationsmay well turn out to be oneof the most important usesof the Internetby managedcarepayers. Pharmaceuticalcompanieshavebeenableto neatly combine physician education and direct-to-consumer advertising through the support of many of the larger medical web sites. Patient educationcan easily transition into consumeradvocacy,and the power of the Internetas a tool for modifying opinion will be usedby numerousparties in the future. Increasedresearchinto the effectivenessof different patient education approachesis needed,particularly with the introduction of advanced technology. However, if this information is handled in a proprietary fashion, then fewer patientswill benefit. REFERENCES 1. Weinberger M. Telephone-based interventions in outpatient care. Ann Rheum Dis 1998;57: 196-7. 2. Weiss BD. Communicating with patients who cannot read. N Engl J Med 1997;337:272-4. 3. Philipson SJ, Doyle MA, Nightingale C, Bow L, Mather J, Philipson EH.
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8. 9.
10. 11.
12.
13.
14. 15.
16. 17. 18.
19. 20. 21.
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Effectiveness of a writing improvement intervention program on the readability of the research informed consent document. J Investig Med 1999;47:468-76. McGinnis JM, Foege WH. Actual causes of death in the United States. JAMA 1993;270:2207-12. Pronk NP, Goodman MJ, O’Connor PJ, Martinson BC. Relationship between modifiable health risks and short-term health care charges. JAMA 1999;282:2235-9. Edington DW, Yen LT, Witting PM. The financial impact of changes in personal health practices. J Occup Environ Med 1997;39:1037-46. Roter DL, Hall JA, Merisca R, Nordstrom B, Cretin D, Suarstad B. Effectiveness of interventions to improve patient compliance: a meta-analysis. Med Care 1998;36:1138-61. Falvo DR. Effective patient education: a guide to increased compliance. 2nd ed. Gaithersburg (MD): Spen Publications; 1994. Marcus BH, Goldstein MG, Jette A, Sin&in-Silverman L, Pinto BM, Milan F, et al. Training physicians to conduct physical activity counseling. Prev Med 1997;26:382-8. Keener RE. “Patient-doctor digital divide”-online but uncommunicative? Health Management Technology 2000;Januaty:36-8. Mullen PD, Simons-Morton DG, Ramirez G, Frankowski RF, Green LW, Mains DA. A meta-analysis of trials evaluating patient education and counseling for three groups of preventive health behaviors. Patient Education and Counseling 1997;32:157-73. Lorig KR, Sobel DS, Stewart AL, Brown SW, Bandura A, Ritter P, et al. Evidence suggesting that a chronic disease self-management program can improve health status while reducing hospitalization: a randomized trial. Med Care 1999;37:5-14. Winkler MA, Flanagin A, Chi-Lum B, White J, Andrews K, Kennett RL, et al. Guidelines for medical and health information sites on the intemet: principles governing AMA web sites. JAMA 2000;283: 1600-6. Hollon ME Direct-to-consumer marketing of prescription drugs: creating consumer demand. JAMA 1999;28 1:382-4. Wright PJ, Fortimsky RH, Covinsky KE, Anderson PA, Landefeld CS. Delivery of preventive services to older black patients using neighborhood health centers. J Am Geriatr Sot 2000;48: 124-30. Cohen SJ, Moran WP, Wofford JL, Preisser JS. Reminders for health maintenance visits. Arch Fam Med 1999;8:295-6. Wagner EH. The role of patient care teams in chronic disease management. Br Med J 2000;320:569-72. Sadur CN, Costa M, Michalik D, Mendlowitz D, Roller S, Watson R, et al. Diabetes management in a health maintenance organization: efficacy of care management using cluster visits. Diabetes Care 1999;22:201 l-7. Squires WD. Patient education: an inquiry into the state of the art. New York: Springer Publishing Company; 1980. Ferguson T. Digital doctoring-opportunities and challenges in electronic patientphysician communication. J Am Med Assoc 1998;280:1361-2. Spielberg AR. On call and online: socio-historical, legal and ethical implications of email for the patient-physician relationship. J Am Med Assoc 1998;280( 15): 1353-9.
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2000
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Dent, MD
B 0
atient education has not historically been a topic of great interest to many physicians. There are several reasons why patient education did not attract much attention from physicians; these include the following: l
l
l
l
l
Patient education has not been perceived as reflecting a great cognitive challenge to the physician, and it certainly is not procedural. Much of the literature in patient education falls outside the traditional medical journals. Much patient education has been assigned to nurses or other nonphysician health care providers. There is poor to no reimbursement for most patient education. Patient education as a separate issue is viewed as superfluous by some physicians who believe they effectively incorporate it into their office visits or who believe that patient obedience is more important than patient understanding.
A brilliant diagnosis and therapeutic plan are of little value if the patient does not understand the importance of taking the prescribed medication or takes it inappropriately. Similarly, missed preventive services resulting from inadequate or ineffective education will lower the quality of care provided. An excellent surgeon operating on a Duke’s class C colon cancer will not provide as good an outcome as a more average surgeon dealing with a class A tumor that was discovered through the patient’s understanding and participating in the distasteful screening tests. The topic of patient education is remarkably different than what it was when I entered practice 20 years ago. Indeed it is increasingly difficult to get a handle on what patient education means, both now and further into the twenty-first century. It may seem like a niggling and superficial issue to worry about definitions or meaning; however, when “education” is used to drive medical outcomes, sway public opinion, or enhance selected medical economic interests, then it bears some scrutiny. For the DM,
December
2000
785
purposeof this article, patient education will encompassall efforts or processesto provide medical information, instructions, or opinions; modify the behavioror healthcarebeliefs of patientsand,hence,medical outcomes;or influencehealth caredecision-makingby patients.It should be recognized that these efforts might augment, diminish, or replace important elements of the physician-patient relationship. I will not discussinpatient educationof patients by nursing staff. This article will focus more on physician efforts in patient education, because it is directed to a physician audience.With educational topics for patients being the mainstay of “content” for many medical web sites, it is now a major areaof interest for physicians. Traditional Approaches In the pre-Internet epoch, patients were “educated” by physicians generally in one of the following manners: Direct face-to-faceinteractions.Much suchcommunication was and is unidirectional (ie, physician to patient). This remains the gold standardbut is under fire becausephysicians havediminishing time to spenddirectly with patients (being more productively put to use calling health maintenance organizations,utilization management firms, and like-minded administrative sorts).The skill of individual physicians in providing emotional support and meaning in addition to factual information will remain as a crucial ingredientin the art of the practiceof medicine. The basic necessityof listening carefully to the verbal and nonverbalinput from patients is also vital to structuring what and how the patient should receive certain information. A major limitation to the provision of information in this manneris the often-underestimatedemotion experiencedby patients in these encounters.This can serveas an effective filter to some of the subtle or evennot-so-subtlepoints the physician is trying to convey.Patient embarrassment,a physician’s lack of awarenessof cultural cues,and physician presentationcharacteristics(eg, disinterest,aloofness,use of complicated medical phraseology)may also derail a well-meaning and articulatediscourse. Written handouts.To many physicians thesewritten descriptionsor explanationsof different medical diagnosesor conditionsremain the essenceof patient education.Provided gratisby pharmaceuticalfirms or extractedfrom medical journals, thesehandoutshaveand continue to be valuable to physicians and patients.Often plainly written and well illustrated, they provide a good adjunct to physicians’ explanal
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tions and exhortations. The amassing, cataloging, and replenishment of this written material may be challenging for a busy physician providing care to patients with a multitude of medical problems. Telephony. Telephone conversations with patients are a very personal form of interaction, akin to face-to-face meetings. This is a timehonored way of providing education and information to patients. It most often occurs in response to patient inquiries or in follow-up to diagnostic tests and procedures. Lacking visual cues, the content of the conversation is of heightened importance and can lead to egregious miscommunication. As a tool to improve return visits to the physician, increase adherence to drug regimens, and provide instruction in management of chronic diseases, telephony has good potential.’ Drug inserts, surgical release/patient consent forms. Carefully crafted with legal liability their focus and purpose, these are necessary tools of our overly litigious society. To achieve comprehensiveness, they are often written for other attorneys rather than patients or physicians. These are excellent examples of how process may occur without fundamental meaning. There are current efforts to enhance patient understanding in this area.2T3 Group meetings. Alcoholics Anonymous provides an example of how health behavior (in this case abstinence from alcohol) was and is influenced by a group support model and some firm/rigid principles (ie, 12-step process). The value of group meetings has been overlooked. The development of chat rooms for individuals aligned by diseases, complaints, or fear is a new development in this process, which will be discussed later.
l
l
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When
Is Patient Education
Effective?
In spite of medical advances, much morbidity and death result from the actions or inaction of the patient.” From personal health habits (eg, diet, smoking, exercise) to following preventive services (eg, mammography, screening for colorectal cancer. pap smears) to adhering to medication regimens, the impact on individual health and societal health care costs is substantial.5,6 Patient education is valuable when it has an impact on these areas. The mere provision of the instruction is of marginal value if it has no impact on the patient or the patient’s family. The issue then becomes what works and what satisfies the needs of the patient? Patient education interventions have shown stronger benefits in patients with a particular condition (such as diabetes, asthma, or hypertension).’ When the patient seeks the information, then it is more likely that the l
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patient will be receptiveto an educationalmessage.There are some caveatsto this, becausethe information has to be educationally and culturally appropriateaswell. However,for a patient to be motivated to learn, he/she must recognize a need for the information and be ready to receive it both physically and mentally, as well as have a receptiveattitude.8 When patients are exposed to a variety of different teaching approaches,interventionsare more effective.A largemetaanalysisof interventions to improve patient compliance found comprehensive educationalapproachesare more effective in enhancingoutcomes. This includes programswith combined educational,behavioral,and affective components.The educational component reflected verbal or written teachinginterventionswith a knowledge-basedemphasis. The behavioral interventions focused on shaping or reinforcing specific behavioral patterns.The affective category used appealsto emotions, attitudes,social relationships, and social supports.When education interventions used multiple strategies (eg, one-on-one education of patients, group education, or written and audiovisual materials), this was also more likely to be of benefit. Utilization outcomes were more influenced by education versus behavioral interventions; however,utilization in the cited studiesconsisted of making and keeping offtce appointments and use of preventive services (pap smears, mammography, vaccination, and colorectal cancerscreening).Telephoneeducationwas found to be particularly effective, and group educationproducedmoderately strongeffects.7 When patient education is customized for the patient, it is more likely to be effective. During an offtce visit the physician can personalize the messagedramatically by tying it to the patient’s physical or laboratoryfindings (eg, dry lung cracklesin the smoker,left ventricular hypertrophyin the patient with hypertension).This is obviously limited to certain conditions.A study of physical activity counseling supportedthe use of counseling,which was tailored to the patient’s motivation, and was more effective when patientsreceiveda greater number of counseling messages.9There are now web sites that attempt to personalize patient education through analysis of the patient’s responsesto a questionnaire.‘O Approacheswith self-monitoring (eg, exerciselogs or diet diaries) seemto be effective for smoking and alcohol abuseand for nutrition and weight control.l1 A self-managementprogram for a heterogeneous group of patients with chronic diseasewas found to result in
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improved health behaviors (eg, minutes spent exercising per week) and health status (eg, fatigue and disability) and fewer hospitalizations and days of hospitalization.‘*
Problems
in Patient Education
Several factors can subvert the process of patient education. Some examples are as follow: Mixed messages. Recently a patient had to have both a colonoscopy and esophagogastroduodenoscopy. The patient was given two different handouts, each one describing how to prepare for one of the two procedures. The problem was that the patient was undergoing the two procedures together under intravenous anesthesia, and the handouts had conflicting instructions on how to prepare for the endoscopies. For the esophagogastroduodenoscopy the patient was to receive nothing by mouth after midnight, and for the colonoscopy the patient was to ingest the second phosphosoda preparation the morning of the procedures. The end result was a confused patient who had to call the office for clarification; a worse outcome could have been a patient poorly prepared and unable to undergo the procedures. The problem of mixed messages extends beyond factual information. The physician may convey a less- or more-concerned attitude toward a problem than the patient education material. This will confuse the patient and bring into question the validity of either the physician’s advice or the education material, or more likely both of them. Subtler are the conflicting recommendations and advice people are receiving on the Internet. Patient education with a mission, over-the-top material. Populating the Internet are sites devoted to specific disease states, therapies, or health belief systems. Some of these sites are convincing and well designed, but they propose remedies that are useless or potentially dangerous for patients. The motives are varied, ranging from simple avarice to near-fanatic groups bound by a rejection of the medical establishment. This can be very confusing for patients. To address this among other issues with Internet health sites, the American Medical Association has recently published guidelines for medical and health information sites on the Intemet.13 Misleading web sites will always have a niche because the natural change in recommendations that occurs as research reveals new answers is disconcerting to some patients. The scientific method may not be well appreciated by frustrated and fearful patients seeking advice and direction. More l
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than at any time in the past, physicians must recognize that their patients will be coming to their offices with highly varied understandings of their health and disease conditions. Direct-to-consumer advertising. Some pharmaceutical companies have discovered the financially salutary effect of advertising directly to patients. This most often takes the form of a mass media effort to inform the public of the value of treating the condition for which the pharmaceutical is prescribed. When used to increase influenza vaccination in vulnerable populations, then the message of the advertising will coincide with physicians’ recommendations. Conversely, when advertisements encourage patients to-ask their physician to prescribe an expensive third-generation antibiotic for pharyngitis, then the direct-to-consumer advertising becomes solely a vehicle for profit instead of a benefit to patients. This activity then has the potential to undermine the value in having the patient be active and responsible for his/her own health care. l4 Scare tactics. There is a strong temptation with certain patients to graphically detail the consequences of a behavior or the failure to adhere to a medical regimen. The physician may believe this is necessary to grab the patient’s attention or simply that the patient needs to be fully informed of the consequences of his/her actions or inaction. The problem with this approach is that fear as the main basis for changing behavior does not have a lasting effect for many patients. If the patient becomes sufficiently anxious to impair the ability to learn or even goes into denial, then ironically the patient will not hear any other message from the physician.* This is not to say the physician should not attempt to create some concern in selected patients. As an example the physician who unambiguously articulates that a patient should cease alcohol consumption because of present and future complications may create a reverberating effect of making the patient uncomfortable with future heavy or binge drinking. I have seen this cause alcoholic patients to “bottom-out” at a much higher level than expected. As with many elements of the physician-patient encounter, moderation in describing adverse outcomes is preferred. Literacy issues are major factors in detracting from some patient education efforts; this is addressed in Dr. Vanderberg’s article in this issue.
What Makes
Patient Education
Work
Every encounter with a physician or an office staff member is an opportunity for patient education. Unfortunately, much necessary and
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valuable information, instruction, and reassurance are not provided to all of the patients in the physician’s practice. Newsletters are a means for a physician to communicate broadly to a large segment of the patients in the practice. The difficulty with newsletters is the time, effort, and expense necessary to keep them produced and distributed in a timely and ongoing manner. Even when the patient does see the physician, the recognition that an individual patient needs help in understanding a disease process or the necessity for treatment or prevention is not always clear. Preventive and long-term care typically requires more patient education. If the physician’s practice is mainly geared toward acute care (as many primary care practices are), then efforts to change behavior versus providing factual information are going to be more challenging. Falvo8 describes this process as a series of steps in which data about the patient are gathered and assessed to develop a plan for education, which is then implemented and its effectiveness evaluated. Although this process may seem daunting, if well organized it can occur in a relatively quick and efficient fashion. Factors that facilitate this process include the following: A highly organized medical record. When the physician is able to readily track the medical services provided to the patient and those that are due to be performed, it is easier to determine when preventive and long-term care have deviated from the anticipated pattern. For a chronic disease, it is important to query the patient regularly regarding the presence of certain manifestations of the disease (eg, in diabetes symptoms of neuropathy), side effects of medication (eg, erectile dysfunction from beta blockers for treatment of hypertension), or whether the patient is regularly checking the status of the disease (eg, peak flow measurements in patients with asthma or finger-stick blood sugar measurements in diabetic patients). Too frequently the physician will overlook an important question because of disorganization rather than a lack of medical knowledge or awareness. If the physician stresses the importance of properly trimming toenails to diabetic patients but doesn’t cneck the patient’s feet during the office visit. the patient will be getting a double message. Indeed regular office visits allow the physician to assess the patient education provided. Chronic disease and preventive care management are improved when the patient regularly returns for office visits.r5 Reminders, either by mail or telephone, have had a modest effect of increasing the number of health maintenance visits and the provision of prevenl
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tive services.16 This level of administrative organization is presently uncommon in most physician offices. Use of other health care educators as part of a team. The use of such teams based around a patient is not new; it has been a regular part of rehabilitation programs for years, but it is now pushing to the forefront in the management of numerous chronic diseases. Given the constraints of office practice for most physicians, the use of dietitians, nurse educators, and social workers (to name a few examples) is a necessity. The use of teams of different health care providers to provide the necessary depth of ongoing education and support for these patients is associated with better control of blood sugars for diabetes.17T18 Preparation of the patient as a decision-maker for his/her health care needs. If the patient assumes responsibility for his/her own health care behavior, then the physician’s job is potentially more efficient. Patient data can be organized before the office visit, along with specific questions and concerns. The patient, at his/her level of understanding, can direct the tailoring of patient education in this circumstance. The patient develops a progressively more sophisticated cognitive understanding of his/her medical condition and needs. To be so prepared, the patient will need to feel free to ask questions easily, be motivated to become more responsible, and not have psychosocial impediments to becoming such a decision-maker. For some patients being able to ask medical questions is impeded by the embarrassment of appearing foolish or not wishing to impose on the physician. Hopelessness, denial, and anger will also block any effort to have the patient become more responsible. The physician must spot and address these attitudes before effective patient education may proceed. In 1970 a program called the Course for Activated Patients was started that enrolled patients with the following objectives: to accept more responsibility for their own care; learn skills of observation, description, and handling of common illnesses, injuries, and emergencies; increase basic knowledge about health; learn how to make economical use of health care resources.19 Thirty years later these concepts are still relevant. The physician having sufficient time, motivation, and inclination to use patient education as a tool for improved outcomes. A core problem in patient education is the relentless need to increase physician productivity, combined with no or little additional reimbursement for patient education. Physicians as conscientious professionals will do their best to educate their patients; but with less office time
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allowed for patient contact, this will be progressively more difficult. If physicians do not try to educate their patients (or direct patients to respected and ethical web sites), more and more Internet sites will fill that role in a disconnected manner from their physician. The physician will then have to spend a substantial amount of time trying to sort out the value and validity of the online material patients will bring to the office or discuss over the telephone.
Future Directions in Patient Education The single greatest factor influencing the future of patient education is the Internet. The pace of activity in this area is so fast that even in the brief time from the completion of this article until its publication, significant changes are likely to have occurred. Linked with the Internet are rapid developments in telecommunication. Interestingly most of the development has been on the consumer/patient side; physician’s offices largely have not been quick to use the Internet. However. patients have ranked information from their own physician’s office as being the most desirable type of online health information.20 This is a very interesting finding. It may well reflect the need for the patient to be able to put an isolated item or fact into the context of the general advice received from the physician. Patients hear so many conflicting medical sound bytes; a measure of continuity and personal linkage may be more meaningful to patients than is often recognized. E-mail There are good reasons why physicians should proceed cautiously in this area. The Table is a general checklist for physicians considering using the Internet for communicating with their patients or handling electronic patient data. Failure to answer patients’ e-mail correspondence in a timely manner may open the physician to legal liability if a patient suffers some injury as a result of a delay. Also patients should always be directed to an answering service for emergencies. Encryption of patientphysician communication is essential; however, a greater security issue may arise in the physician’s office if access to this form of communication is not limited. A disgruntled employee could communicate improperly to patients under the physician’s name. Patients should also be warned that any e-mail sent from their workplace can and often is scrutinized by more senior management. It is at present unclear to what extent the physician has an obligation to retain e-mails as a part of the medical records and whether there is a need to obtain the patient’s
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TABLE.
Checklist
for physicians
using the Internet
Is your email read frequently? Are your patients clearly instructed not to contact you for emergencies through email? Is your email secure? Do you have the administrative resources to handle another avenue of communication? Are you comfortable with the fact that any communication with email is open to later scrutiny?
consent for the transfer or forwarding of this information (this would appearlikely). *l Also if the implementation of e-mail communication with patients is not part of a broadereffort toward the developmentof automatedprocessesin the office (eg,an electronicmedical record,automated scheduling,electronic referrals,and prescriptions),then thereis a risk that it will not be handled securelyand effectively.
Commercialsand Sponsorships Information for patients is plentiful on the Internet. Most of the larger sites do not charge for the information. It should also be noted there is much good physician information at the larger more reputable sites. The revenue source for most of these web sites is transactions such as sales of pharmaceuticals,provision of services such as physician billing, advertising, or directing patients to companies recruiting for researchprograms. Corporate sponsorshipof sites is also a source of revenue. Drug companies are the main source of these sponsorships, and the sites sponsoredusually deal with the diseasesintegral to their business.
Chat Rooms One feature of the Internet, which may be quite influential for some patients, is the chat room. This is a version of the group sessions previously mentioned. Patients may benefit from understanding how other people with similar medical problems are dealing with their condition. The anonymity of these groups can create problems, with participants misrepresenting themselves. There needs to be knowledgeable leadership of these chat rooms, which might not occur if they are “open” 24 hours a day. The use of more organized virtual support groups, with a definite scheduled leader and time frame, is more likely to benefit patients. The use of groups is important as a means of making patient education more cost effective, maximizing the impact of the educator.
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Security
and Confident&y
As a consequence of the Health Insurance Portability and Accountability Act of 1996, the Department of Health and Human Services will shortly be finalizing rules related to ensuring the security of patient medical information transmitted electronically. A key issue is the obtaining of a release from the patient for the use or transmittal of this information. This will have a major impact on sites receiving patient-specific data. This is a potentially valuable source of data to many parties; however, it is most likely going to require specific patient approval for every different use. Additionally, although some sites are offering medical advice, most will steer clear of anything that looks like they are engaged in the practice of medicine. This is because of unclear and potentially high-risk liability concerns and licensure coverage for each state in which involved patients reside. Other
Technology
The use of television, particularly when linked in to the web, will offer a number of additional methods for patient education. Patients will be able to see how certain procedures should be performed (eg, changing a colostomy bag or performing a finger-stick blood sugar test). If a camera is attached to the computer or web-enabled television, then physicians and nurses will be able to conduct interactive educational sessions. An intermediate technology presently in use consists of a unit that plugs into the patient’s telephone line and allows the patient to answer a set of questions posed by a nurse. The response consists of pressing one of four buttons on the screen. The unit from Hero Health Network called the Health Buddy0 has had its greatest use with diabetic patients. This is a clever interactive tool to case manage some chronic disease states. Computer-assisted education has been used with some efficacy fo: several years. Occasionally units have been placed in physicians’ off-ices, or patients have used a telephone to work their way through a series of prompts. Office units face a problem with space limitations in many waiting rooms and potentially with interfering with the scheduling and flow of patients through the office. A kiosk has been used to provide the patient with greater privacy in this setting.
Final Observations The value and importance of patient education have achieved a high point of prominence with the widespread use of the Internet. The Internet is popular with patients because it provides ready access to those who are seeking medical information. Unfortunately a number of patients who
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really needthe information arenot seekingit out andmost importantly are not incorporatingit into a changein behavior.The impersonalnatureof seekinginformation on the Internet is a benefit for patientswho want to gain a generalunderstandingof their medical problemswithout having to exposeeithertheir ignoranceor curiosity.As was mentionedpreviously in this article, most patientswhen questioneddo want medical information recommendedby their physician, which reflects an additional need to havea more personalattachmentto the information and an opportunity to review the educationalmaterial with their personalphysician. The empowered,responsiblepatient is a desirablegoal. From a patient education standpoint, however, some patients with the easy accessto information provided by the Internetbecomeinsecureandoverwhelmed. The physician will needto be particularly patient with theseindividuals, becausetheir motivation to learn and assumeresponsibility can be quite beneficial if properly focused. Economic issuesareimportant in this changingpatient educationenvironment, and not only with regard to the Internet. Managed care has certainly attemptedto usepatienteducationto hold down healthcarecosts. It should be noted that for many preventiveservices,the managedcare companywould not likely benefit much financially from the betterhealth of patientsuntil decadesin the future,but for accreditationpurposesdocumentation of patient educationhas beenviewed as necessary.The establishment of reasonablepatientexpectationsmay well turn out to be oneof the most important usesof the Internetby managedcarepayers. Pharmaceuticalcompanieshavebeenableto neatly combine physician education and direct-to-consumer advertising through the support of many of the larger medical web sites. Patient educationcan easily transition into consumeradvocacy,and the power of the Internetas a tool for modifying opinion will be usedby numerousparties in the future. Increasedresearchinto the effectivenessof different patient education approachesis needed,particularly with the introduction of advanced technology. However, if this information is handled in a proprietary fashion, then fewer patientswill benefit. REFERENCES 1. Weinberger M. Telephone-based interventions in outpatient care. Ann Rheum Dis 1998;57: 196-7. 2. Weiss BD. Communicating with patients who cannot read. N Engl J Med 1997;337:272-4. 3. Philipson SJ, Doyle MA, Nightingale C, Bow L, Mather J, Philipson EH.
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Effectiveness of a writing improvement intervention program on the readability of the research informed consent document. J Investig Med 1999;47:468-76. McGinnis JM, Foege WH. Actual causes of death in the United States. JAMA 1993;270:2207-12. Pronk NP, Goodman MJ, O’Connor PJ, Martinson BC. Relationship between modifiable health risks and short-term health care charges. JAMA 1999;282:2235-9. Edington DW, Yen LT, Witting PM. The financial impact of changes in personal health practices. J Occup Environ Med 1997;39:1037-46. Roter DL, Hall JA, Merisca R, Nordstrom B, Cretin D, Suarstad B. Effectiveness of interventions to improve patient compliance: a meta-analysis. Med Care 1998;36:1138-61. Falvo DR. Effective patient education: a guide to increased compliance. 2nd ed. Gaithersburg (MD): Spen Publications; 1994. Marcus BH, Goldstein MG, Jette A, Sin&in-Silverman L, Pinto BM, Milan F, et al. Training physicians to conduct physical activity counseling. Prev Med 1997;26:382-8. Keener RE. “Patient-doctor digital divide”-online but uncommunicative? Health Management Technology 2000;Januaty:36-8. Mullen PD, Simons-Morton DG, Ramirez G, Frankowski RF, Green LW, Mains DA. A meta-analysis of trials evaluating patient education and counseling for three groups of preventive health behaviors. Patient Education and Counseling 1997;32:157-73. Lorig KR, Sobel DS, Stewart AL, Brown SW, Bandura A, Ritter P, et al. Evidence suggesting that a chronic disease self-management program can improve health status while reducing hospitalization: a randomized trial. Med Care 1999;37:5-14. Winkler MA, Flanagin A, Chi-Lum B, White J, Andrews K, Kennett RL, et al. Guidelines for medical and health information sites on the intemet: principles governing AMA web sites. JAMA 2000;283: 1600-6. Hollon ME Direct-to-consumer marketing of prescription drugs: creating consumer demand. JAMA 1999;28 1:382-4. Wright PJ, Fortimsky RH, Covinsky KE, Anderson PA, Landefeld CS. Delivery of preventive services to older black patients using neighborhood health centers. J Am Geriatr Sot 2000;48: 124-30. Cohen SJ, Moran WP, Wofford JL, Preisser JS. Reminders for health maintenance visits. Arch Fam Med 1999;8:295-6. Wagner EH. The role of patient care teams in chronic disease management. Br Med J 2000;320:569-72. Sadur CN, Costa M, Michalik D, Mendlowitz D, Roller S, Watson R, et al. Diabetes management in a health maintenance organization: efficacy of care management using cluster visits. Diabetes Care 1999;22:201 l-7. Squires WD. Patient education: an inquiry into the state of the art. New York: Springer Publishing Company; 1980. Ferguson T. Digital doctoring-opportunities and challenges in electronic patientphysician communication. J Am Med Assoc 1998;280:1361-2. Spielberg AR. On call and online: socio-historical, legal and ethical implications of email for the patient-physician relationship. J Am Med Assoc 1998;280( 15): 1353-9.
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