Patient Education: the End of One-Way Traffic

Heinz Redwood
October 17, 2002 (Reviewed: October 19, 2004)

One-Way

'One-Way' is defined by the Oxford Dictionary as "moving or allowing movement in one direction only". It is an apt description of the status of patient education as it was conceived and practised in the past. Not only then: the underlying assumption in most books and articles on the subject today is still that patient education is one-way traffic: from teacher to pupil; from physician, nurse, administrator and policy maker to patient. The public (= actual and future patients) is there to receive the blessings of health education from above.

Of course, education is based on the principle of knowledge being handed down from those who know a lot to those who know less or are ignorant. To deny the functional flow of education would destroy its benefits. The problem is not that some will teach and some will learn, but that the process is regarded by most by health professionals and policy makers as one-way traffic.

Experts are conscious of the problems. Health care literature is prolific on the need for attitude change, backed by academic and field research demonstrating widely acknowledged deficiencies. Again and again health professionals are given the results of surveys of patients' attitudes and are exhorted to improve their communications. Volumes are written on how to deal more effectively with patients' complaints. Yet all of this aims mainly at improving the educational skills of health professionals, not those of patients.

The impression persists that patients are only recipients, not contributors to health education.

The passive patient

The underlying though unspoken assumption is that patients are passively fixed in their health behaviour and also need to be educated in the passive voice. The dynamic concept that patients can take steps to educate themselves and change their attitudes, relationships, and health outcomes, remains peripheral in 'real life' health care, because it implies a more active stance by patients in health education. That may be a splendid idea, but it is also a time consuming challenge for hard pressed professionals who see education as one-way traffic, not as dialogue.

"Passive patients, although viewed as difficult patients in some instances, may be a product of the health care system and may once have been valued as ideal patients"¹

Dare one add that, in many quarters, passivity is still regarded as close to 'ideal'? Professionals (not only in health care) tend to prefer a passive laity to one that sets out to meddle with experts by attempting to contribute actively to joint decisions. Indeed, the word activist embodies the establishment's fear of the troublemaker and kindles equivocal emotions in those whose attitudes and practices are being questioned. In health care, the educated patient will inevitably be more active than the established system has reckoned or foreseen.

Today, the partly self-educated patient presents the system with an unfamiliar and awkward challenge. The movement towards self-education via the Internet and mutual education in advocacy groups for specific diseases is on the march. It is one of the strongest forces to emerge from the many social, financial and scientific changes that are shaping the future of health care.

Patient education from wellness to incurable disease

The participation of patients in their own health education is neither a passing craze nor a protest movement.

Once-upon-a-time, health was a privilege. More recently, it was pronounced a right: one that patients may or may not be able to exercise fully under a variety of national systems. Now, health is fast approaching the status of a necessity in the industrialised world². Increasing longevity, greater social mobility, the progressive disappearance of support from the extended family, and the spread of single-adult households (35% of all households in the UK in 2000³) -- these trends speak for themselves. Health is becoming a necessity if we are to maintain full earnings capacity during working age and physical independence in retirement.

As health becomes a necessity, so does health education. The two go hand in hand. The span of education ranges from the promotion of healthier lifestyles and an understanding of risk factors for the prevention of many infectious and chronic diseases, to providing knowledge about their disease to sufferers, their families and their carers. Knowledge may not be able to solve the problem, but it can do much to alleviate it and guide patients towards the most effective options for their condition and circumstances.

Health education is not limited to matters affecting the prevention and treatment of illness. In the social context of Health as Necessity, education will also promote knowledge about how the health care system functions in your country and your community; the advantages and disadvantages of various health insurance options; the availability and purpose of self-help and advocacy groups for particular diseases; the position of carers for seriously disabling conditions; and how political, scientific and bioethical trends will affect you and your health.

Some examples of bioethical issues that could directly affect any of us:

• the confidentiality of data about us as participants in a clinical trial for a new drug
• the use of human embryos in stem cell research that may or may not produce radical advances in medicine for your 'incurable' disease or mine
• the development of diagnostic kits for the detection of a pre-disposition to develop certain diseases like cancers or diabetes later in life. " Should we regard (such persons) as healthy until the onset of disease, or should we view them....as asymptomatically ill?"⁴ And what, we may well ask, would 'illness without symptoms' -- if it leaked out -- imply for our employability, insurability, and credit rating?

These questions go beyond the technology of medicine. They are moral and political issues in which the educated patient will ultimately have a more potent voice than those who are 'health illiterate'.

The active patient [citizen] in search of health information and education

In matters of health education, as in other educational areas, successful efforts to produce results follow a typical pattern or sequence:

Motivation - Access - Information - Understanding - Application

Motivation is the start of a chain reaction whose outcome will depend on how well the knowledge gained during the educational process is being applied. That is particularly important in preventive medicine involving healthier nutrition, exercise, and cessation of smoking where self-control in daily life is critically determined by personal motivation.

Motivation and access to the educational process are closely linked. Time, money, resources and bureaucracy will tend to limit access to health professionals unless a particular educational programme is deemed to be vitally important for society as a whole. Access to patient advocacy and self-help groups is highly motivating but, in the past, was often dependent on having an active group nearby. Advocacy and self-help have advanced rapidly in the USA. Other industrialised countries (Canada and Northern Europe in particular) are beginning to catch up; even in Japan - where patients were long regarded as properly passive on cultural grounds - advocacy is beginning to stir. Throughout the industrialised world, this process is powerfully influenced by access to the Internet.

The remaining links in the chain [Information - Understanding - Application] represent the process of education for the motivated patient with access.

Information, in theory widely and easily available, is probably the weakest link in the chain. Recent studies of patients with a variety of diseases confirm their need and desire for information in order to gain a better understanding of their condition. This, in turn, will enable them to apply the lessons of health education more effectively.

A study of 22 doctors and 239 ulcerative colitis patients in Manchester, England who were consulted on the development of a new guidebook for the condition, concluded that

"....patients and doctors had different views on the utility of the guidebook. Patients wanted information that was therapeutic and supportive and were concerned about the personal effects of having ulcerative colitis and consequently finding out about other people's experiences. By contrast doctors expected information to increase compliance and help patients make more appropriate use of services"⁵.

Evidently, "finding out about other people's experiences" is more easily achieved in self-help groups than in the organised setting of a health service. The authors went on to remark:

"People are willing to be more involved in their health care but want to understand the full consequences of any actions they take"⁵.

The quest for understanding is a recurrent theme in patient education. A New Zealand study of 62 adults with chronic heart failure concluded that:

"Our survey....reveals that approximately 40% of the patients interviewed appear not to understand the nature or seriousness of their heart failure condition.... We also found that almost one-fifth of the patients interviewed want better information....than they currently receive". Illustrating this, the authors cite examples from their interviews with patients: "I thought that heart failure was when people drop dead" and "My doctor told me nothing. Just stick to the pills. He doesn't say why"⁶

This theme of wanting to know why also came through in a qualitative study of asthma patients in the UK. Among what the authors consider typical responses, one patient said:

"I need to know what the drugs I actually am on do, as in what prevents it, what to know if I have an attack, which one do I need, not just to be told it, but I need to know why. It helps me to understand"⁷.

The belief that understanding may lead to more effective application of knowledge was examined in a French investigation of the attitudes of 1,595 hypercholesterolemic patients (i.e. with excessively high cholesterol) about the duration of their treatment with cholesterol-reducing drugs. The opinions of those who regard short-term treatment as appropriate (until cholesterol 'returns to normal') was compared with those who believe in long-term medication (even if the figures show a 'return to normal'). Analysis showed a consistently better awareness of correct knowledge and rejection of incorrect knowledge about their condition by the 'prolonged treatment' group of patients who, in the authors' view, were therefore more likely to comply with the prescribed treatment⁸.

The role of the Internet

The Internet is a potent new force in patient education. It is probably the easiest means for the active patient to acquire knowledge and, by electronic interaction with self-help and patients' advocacy groups as well as with health professionals, to turn knowledge into understanding. Whether the easiest is also the best method for this purpose is a more complex question, and one on which the views of patients and health professionals tend to diverge.

What is undeniable is that there will be two separate groups of patients: Internet users and non-users. One of the few certainties in health care is that the proportion of patients who are Internet users will grow rapidly during the present decade. Their influence on health care systems and practices will grow with increasing information and understanding, fuelled by the sheer motivating power of access to the Internet. An Internet user probably is, or will become, a different type of patient from the archetype of the past with whom health professionals are comfortably familiar. The Internet is an important contributory factor to the growing trend towards the empowerment of patients. What is still unclear is whether the Internet-empowered patient will actually achieve better health outcomes. The sooner this can be tested, the better.

Meanwhile, about one-in-three Internet users are searching for health information. In 1999, 30% of searches of the U.S. professional Medline database were by non-professional health care consumers.

In 2000, the Top-10 countries for Internet usership were:

COUNTRY	INTERNET USERS (millions)
USA	90.7
Japan	37.5
Germany	19.8
UK	17.0
South Korea	16.5
Canada	14.9
China	13.7
Italy	11.0
Australia	9.9
France	6.8

Source: Euromonitor "World Consumer Lifestyles Databook, 1st edition 2002"

By May 2002, Nua Internet Surveys⁹ estimated that there were 581 million online worldwide, of whom 32% were in Europe, 31% in North America, 29% in Asia Pacific, and 8% in the rest of the world. At a guess, these might include up to around 170 million searchers for information on health. Even if actual usership for this purpose is lower than the estimate suggests, it represents a formidable array of mainly new searchers for information on health topics for themselves, their families, their friends and for those in their care.

Medically, the Internet is still regarded as controversial. We need to be able to distinguish between reliable and unreliable information on the web and, above all, between sites we can trust and those that are run by eccentrics with peculiar axes to grind, or by cowboys for whom the Internet is a glorious opportunity to deceive the innocent. We also need to be able to spot what passes for information but, in reality, is advertising in disguise.

"A recent literature search turned up 100 studies that attempted to rate the accuracy and completeness of health information on the world wide web. Ratings ranged from about 15% to 85%." (BMJ Editorial, 9th March 2002¹⁰)

The editorialist warns, however, of underrating the Internet user's ability and determination to form online and offline networks to evaluate and interpret medical information, and draws a penetrating conclusion:

"We believe that the 21st century will be the age of the net-empowered medical end user and that the patient-driven online support networks of today will evolve into more robust and capable medical guidance systems that will allow end users to direct and control an ever growing proportion of their own medical care." [Ferguson, op.cit.10]

The Internet is a powerful instrument of health education. Today, many health professionals still regard the web as treacherous ground, just as those who were accustomed to driving a horse and carriage used to recoil from the 'dangerous' railways and the 'unreliable' automobile as effective methods of getting from A to B. These growing pains will pass. Meanwhile, web sites with trustworthy health information will have to become the norm, and health professionals will need to accept the knowledgeable patient as an appropriate partner in health care decisions. At that point, patient education will have ceased to be one-way traffic.

Footnotes
1. Duxbury, J. "Difficult Patients", Butterworth-Heinemann, Oxford 2000
2. Redwood, H. "Where is the Pharma Industry Going? - Insights for the New Millennium", Scrip Reports, Richmond, Surrey, England, May 2002
3. Social Trends No.31, Stationery Office, London 2001
4. McInerney, J.D., "Education in a Genomic World", J. of Medicine and Philosophy, 27/3, 369-90, June 2002
5. Kennedy, A.P. and Rogers, A.E., "Improving patient involvement in chronic disease management: the views of patients, GPs and specialists on a guidebook for ulcerative colitis", Patient Education and Counseling 47, 257-63, 2002
6. Buetow, S.A. and Coster, G.D., "Do general practice patients with heart failure understand its nature and seriousness and want improved information?", Patient Education and Counseling 45, 181-5, 2001
7. Caress, A-L et al, "An exploratory study of priority information needs in adult asthma patients", Patient Education and Counseling 47, 319-27, 2002
8. Consoli, S.M. et al, "Facteurs associés à l'opinion des patients hypercholestérolémiques sur la durée de leur traitement", La Presse Médicale 31, 1302-8, 7th September 2002
9. Nua Internet Surveys, www.nua.ie/surveys/how_many_online/, accessed 30th August 2002
10. Ferguson, T., "From patients to end users", BMJ Editorial, 324, 555-6, 9th March 2002

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