Patients, Doctors and the Internet: a Question of Trust

Heinz Redwood
November 20, 2002 (Reviewed: November 13, 2004)

The "Cheque in the Post" Syndrome

Requests for payment of debts are often met with the bland and apparently reassuring reply that "a cheque is in the post". Question: is that really reassuring? Do you believe it? Or are you worried and suspicious? Have you checked the debtor's credit rating? In short, could it be that your trust is misplaced?

In health care, trust is central to the relationship between patients, doctors and the Internet. Trust has been described as "the scarcest of medical resources" and "under siege"¹. It is a fragile commodity. The question that is preoccupying the players in this triangular relationship is whether trust is gradually being replaced by the "Cheque in the Post" syndrome of nebulous promises and uncertain performance. Is trust being destroyed and, if so, who is responsible?

The nature of trust in health care

Trust is at work when patients put themselves into the hands of physicians for diagnosis, advice and treatment. The more helpless patients are, the more must they be able to trust the physician to act in their interest - and not, for example, primarily in the interest of third party payers, or drug companies, or the latest fashionable medical theory, or doctor's own pocket.

Under the Geneva Declaration (a modern version of the Hippocratic Oath, as revised in 1983), a doctor undertakes "to make the health of my patient my first consideration" and "to prevent considerations of religion, nationality, race, party politics or social standing (coming) between my duty and my patients"². As the first Geneva Declaration was signed shortly after the end of World War II, the emphasis on who doctor and patient are and how doctors might react when put under ideological pressure is understandable.

Recent statements of ethical obligations are more concerned with what we might term the practical aspects of medicine, involving the profit motive, the exposure of incompetent colleagues, and the preservation of absolute patient confidentiality². News items often remind us of considerable deficits in these and other 'modern' elements of trust.

Trust is not one-sided. Reciprocity demands that health professionals should also be able to trust their patients, for example to comply with prescribed treatments and to avoid violent and abusive behaviour in hospitals and doctors' offices. The latter occurs so frequently nowadays that only the most extreme cases are regarded as newsworthy by the media.

The creation of trust in health care is conditioned by the behaviour of the parties, by the ground rules of the environment in which they operate, by an understanding and acceptance of ethical standards and limits, and by the availability and flow of information.

Changing relationships: a brief history of trust

There is a widespread belief that, once upon a time, patients trusted doctors uncritically and wholeheartedly whereas, in today's more sophisticated society, trust has faded and been replaced by scepticism and wariness. The autonomous, empowered patient has good reason, it is said, to take trust in the medical profession with a pinch of salt.

Such assertions are, at best, oversimplifications and, at worst, plainly wrong. So is the belief that things were always better in the past.

Until the 19th century, doctors were usually represented in literature and on the stage as arrogant, avaricious, secretive, and incompetent. In 17th century England, the celebrated diarist Samuel Pepys considered that "the person best placed to understand his own complaints and safeguard his own health was generally himself"³. At that time, doctors were not able to do much for patients. That was reflected in their relationship.

A hundred years ago, the index of the British Medical Journal for 1902 contained only a few references to patients, and most of those were concerned with money and professional etiquette, as in "Patients, private, becoming paupers" and "Patients, presents from" and "Patients, touting for". There was a long controversy about a doctor 'stealing' a patient from a colleague for whom he was acting temporarily. This concluded with an editorial ruling that a substitute doctor "must absolutely refuse to supersede the friend or principal for whom he is acting, even though requested by the patient to do so." Evidently, patients were regarded as a physician's property in 1902⁴.

During most of the 20th century, 'Doctor knows best' was widely accepted by patients, most of whom knew little about health care, had few reliable sources of information, and were not expected to take an active role in their relationship with physicians. Vast improvements in sanitation and public health as well as the miracle drug era (1935-1960) transformed patients' respect for doctors who were now able to cure most infectious diseases. It was a historic high point of trust between patients and the medical profession.

Why trust in health care is beleaguered

The subsequent decline in trust is a general phenomenon in modern society where

"...traditional relationships - if they ever existed - at work, with colleagues, and with the boss have materially changed as a result of telework, e-mail, virtual modes of operation, networking, video-conferencing and many wider aspects of communication and information technology. Reduced to a common denominator: the direct, personal and interactive contact between individuals has weakened"⁵.

In modern health care, too, this weakening of trust can be attributed to dwindling personal rapport and frequent breaks in contact between individual physicians and 'their' patients. The root cause is the conflict between rising health expectations by patients and energetic cost containment by health care payers. The assertion of patients' rights, the formation of self-help groups and organised advocacy, and major advances in patient education are clashing with strong pressure on the medical profession to toe the budgetary line.

During the past two decades, most reforms of health care systems have aimed above all at cost savings and greater cost-effectiveness. Nothing wrong in that.....except that, in practice, reformers are experiencing serious difficulties in improving system efficiency without at the same time weakening the relationship between doctors and patients.

For example, the transition from 'fee for service' to group practice and managed care has significantly changed relationships:

"In the past, a patient's health was the concern of one physician, then one patient came to be cured by several physicians; and now one person is cared for by several health care providers"⁶.

These changes are the result of

(i) social mobility of both doctors and patients
(ii) the ever-increasing tendency of referring patients to specialists, and
(iii) frequent variations in treatment and payment induced by health insurers and managed care organisations in their efforts to contain costs.

As a result, patients can sometimes develop a greater sense of 'loyalty' to institutions ("my hospital") than to physicians. The danger implicit in these trends is that business considerations will prevail over the welfare of the most costly patients who are also the most vulnerable: the elderly, the chronically ill, the disabled, and the mentally handicapped⁷.

Attitude surveys

The findings of extensive attitude surveys of the general public give a different picture for less vulnerable segments of the population. True, in most countries, a majority of the public have consistently expressed a strong desire for 'fundamental change' in their national health care systems. Yet, when asked about their personal experience of health care, 49% of American and 50% of British respondents considered that "Medical care received by self and family in the past year" was excellent or very good, and only 15% and 14%, respectively, fair or poor. Similarly, 59% and 56%, respectively, praised "care received at last doctor visit", and 52% of American and 62% of British respondents described their "overall experience of hospital care" as excellent or very good, compared with 18% in both countries who described it as fair or poor.⁸.

A French survey by IPSOS recently reported that the public regards GPs as "sympathique, compétent et méritant la confiance" ("likeable, competent and trustworthy"). Nearly three-quarters trust their own GP who 'explains' (72%), reassures (72%) and informs (71%). 58% still have a family doctor, but one-third of these believes that there are fewer family doctors around than in the past, and over two-thirds regret that. However, 42% of respondents also regard themselves as more demanding in relations with their physician than they used to be, and as many as 68% would consider taking legal action if they 'fell victim to medical error' and 'regarded their trust as misplaced'⁹.

Generally, in Europe and North America, the public will criticise the health care system but express quite a high level of satisfaction with its own experience within that system while becoming more demanding and less tolerant of deficiencies. However, to suggest that the physician-patient relationship now lies in ruins would fly in the face of 'real life' experience. We can observe growing problems in the doctor-patient relationship and describe them broadly as a 'Dilution of Trust'. Certainly, 'blind trust' is rapidly being replaced by 'informed trust'. Being aware and understanding the reasons for this tendency is a first, necessary step in striving to maintain trust between doctors and patients in the health care challenges that lie ahead.

Enter the Internet and e-health

When in love, "Two's company, three's none". The old saying may well be true of today's amorous relationship between the patient and the Internet. Is e-health coming between the traditional pair - doctor and patient - whose relations, as we have observed, are on trial?

The evidence is mixed but the trend is clear. Use of the Internet by both doctors and consumers (including patients) for e-health purposes has risen explosively in the USA and steadily, but more slowly, elsewhere. The pattern, too, is clear. Initially, many consumers are enthusiastic e-health users of the Internet, whereas physicians tend to be suspicious or hostile. With practice, these attitudes meld or even cross over. Consumers will become more critical of unreliable information and untrustworthy websites, while doctors will begin to see clear advantages in using the Internet to supplement their information and interact with their patients. At the crossover point, the Internet will actually begin to enhance the quality of the doctor-patient relationship.

"Wild assertions!" may be your - the reader's - reaction; so let us look briefly at recent evidence.

Some facts about doctors and e-health seekers

"Doctors are losing their place in society as the exclusive source of medical knowledge ...(but)...patients still trust the information they get from their doctors more than they do from Web sites"¹⁰.

A national survey by the Pew Internet and American Life Project in March 2002 found that "more people go online for medical advice on any given day than actually visit health professionals, according to figures provided by the American Medical Association."
An earlier survey of 500 online 'health seekers' (June-August 2001) revealed that 55% gathered online information before visiting a doctor, and 32% sought information about a particular doctor or hospital. Of those who considered their online searches successful, 38% reported that it "led them to ask a doctor new questions or get a second opinion"¹¹.

On the question of trust, nearly three-quarters of health seekers have also rejected e-health information. The survey listed three principal reasons cited by health seekers for turning away from a website¹¹:

1. "Too commercial and seemed more concerned with selling products than providing accurate information" (47%)
2. Source of the information could not be determined (42%)
3. Unable to ascertain when the information was last updated (37%)

These findings are a far cry from the widely held view that Internet health seekers are ignorant, gullible and easily misled. Above all, under-estimating the learning curve in e-health is to misunderstand the consumer's thirst for knowledge and growing ability to trust or reject the knowledge that is on offer.

Another U.S. survey concluded that, when first experiencing symptoms, consumers are just as likely to go to the Internet (75%) as they are to go to a physician (77%). In addition, 62% go back to the Internet after receiving a prescription¹².

In Europe, a recent Internet survey on this website in five languages found that, among 6,699 European respondents, 73% indicated the physician as their preferred source of health information; but 45% also used the Internet, while 19% mentioned the Internet but not the doctor as preferred ¹³.

Europe is some way behind the US in e-health seekers, but their reactions to it are similar. A Datamonitor survey of 4,531 consumers across Europe and the US in June 2002 showed that 36% of European searchers for online and offline health information have used the Internet for this purpose (66% in the US). 40% of European e-health seekers (48% in the US) would like to discuss Internet information with their doctors. The need for trustworthy Internet information is stressed as a prime need and opportunity¹⁴.

Doctors initially rejected the idea of consumers and patients rummaging for 'unreliable' information on the Internet and subsequently, armed with thick wads of print-outs, indulging in 'time-wasting' discussions with professionals. Gradually, doctors are coming round to a more positive view of the e-patient. For one thing, that type of patient is here to stay. Secondly, many e-patients are well informed and want 'second (and third) opinions' before difficult medical decisions are taken, especially when there is a serious health threat. Thirdly, that elusive person-to-person relationship between physician and patient is actually strengthened by interaction on more equal terms. Finally, doctors have found that it may take less time to explain complex medical information to Internet users than to non-users¹⁵.

Doctors in the U.S. are themselves prolific users of the Internet. In interviews with 400 U.S. physicians, the Boston Consulting Group found that 89% use the Internet, and "roughly one-third of these same doctors report that the information they find on the Internet has a major impact on the way they interact with patients. These doctors may well represent the first wave of e-practitioners"¹⁶.

A Question of Trust

For the future, everything will hinge on trust: between doctors and patients, between patients and Internet websites, and between doctors and e-health information.

No one would claim that today's level of trustworthiness is adequate. Some of the deficiencies can be attributed to the growing pains of a new technology in health care, an area where trust is a prime requirement. Other problems arise from confusion between what is 'information' and what is active promotion intended to sell products or services. Both are in principle legitimate, but they need to be kept distinct from one another if e-health is to be accepted as trustworthy in the long run.

The challenge is essentially similar to that of distinguishing between 'news' and 'comment' in the media. The practised user learns to distrust those who spike their output with surreptitious comment disguised as news. In health care, a trustworthy website will need to maintain a clear distinction between information and promotion. That is the challenge for those who want the relationship between doctors, patients and the Internet to develop constructively and to the benefit of health outcomes.

Footnotes
1. Illingworth, P., "Trust: The Scarcest of Medical Resources", J. of Medicine & Philosophy, 27(1), 31-46, 2002
2. Gillon, R. "Philosophical Medical Ethics", John Wiley & Sons on behalf of The British Medical Journal, Chichester 1986
3. Porter, R. "The patient in England, c. 1660-c. 1800", in Wear, E. (ed) "Medicine in Society", Cambridge University Press, 1992
4. British Medical Journal 1902 (Volume II), editorial comment on correspondence, 1003
5. Sell, F. L., "Gravierende Folgen des Mangels an Vertrauen", NZZ Online, 25th May 2002, www.nzz.ch/2002/05/25/th/page-article85BR1.html (author's translation of extract)
6. Mori, M. "The twilight of 'medicine' and the dawn of 'health care' - Reflections on Bioethics at the Turn of the Millennium", J. of Medicine & Philosophy, 25 (6), 723-44, December 2000
7. Peppin, J. F., "Business Ethics and Health Care: The re-emerging Institution-Patient Relationship", J. of Medicine & Philosophy 24 (5), 535-50, October 1999
8. Donelan, K., Blendon, R. J. et al, "The cost of health system change: public discontent in five nations", Health Affairs 18 (3), 206-16, May/June 1999
9. "Médecins: l'opinion des Français" (report of IPSOS Survey), Le Concours Médical, 124 (04), 267, 2nd February 2002
10. Blumenthal, D., reported by Health Behavior News Service, "Information Age will change doctors' role in healing", www.hbns.org/newsrelease/wired9-3-02.cfm, 3rd September 2002
11. Pew Internet & American Life Project "Vital Decisions", Summary of Findings, and Part Six: Impact, Washington, D.C., May 2002
12. Vividence survey, reported by Scrip, "Internet consulted as much as doctors", 22nd March 2002, page 12
13. Health and Age, "Europeans require more health information - Survey Results from Europe", www.healthandage.org, August 2002 (on file)
14. Datamonitor survey, October 2002, reported by Inpharm Industry Review Newsletter, "eHealth: Internet set to change the patient/doctor relationship", 28th October 2002
15. Ferguson, T. "Online patient-helpers and physicians working together: a new partnership for high quality health care", BMJ, 321, 1129-32, 4th November 2000
16. Information Technology Association of America, ITAA E-Letter, "E-Health E-Data: Boston Consulting Group Finds Doctors Are Now Online in Force", www.itaa.org/sec.htm, December 2001

Related Links
Patient Education: the End of One-Way Traffic
Click here to read the other articles on Health Care Policy written by Heinz Redwood

Please take a moment to give us your comments. For questions about Health matters you may check our "Questions & Answers" Portal and Service.