The Resourceful Patient

3.1 Knowledge

It is now recognised that patients need knowledge about their disease and its treatment.

3.1.1 Patient knowledge before the Web

Studies of patients in every culture and country have shown that patients are not ignorant about disease and illness. Patients' knowledge, however, has traditionally been derived from the local community, friends, and family. It is knowledge of a different type to the knowledge that clinicians have.

In the last few decades of the 20th century, the amount of medical knowledge of high quality grew rapidly and became much more relevant to the healthcare problems that patients faced than the beliefs that they had acquired from intermittent contact with the health service and frequent contact with members of their own community. However, when people sought more knowledge, they found they were often excluded from medical libraries. Public libraries, except for the largest, had a slender stock of books on medical subjects, usually consisting only of 'Home Doctor' books, which by and large present a biased, greatly simplified and often out-of-date summary of medical knowledge.

3.1.2 Patient knowledge on the Web

Everything has changed with the World Wide Web and large numbers of Web sites are now available. Famine has turned to surfeit, and although high quality information, such as the abstracts of Cochrane Reviews, are available on the World Wide Web, there is also a large amount of junk. Studies of specific topics such as depression or incontinence have revealed that much of the information is misleading, sometimes plain wrong, and occasionally harmful.

Two approaches have been adopted to try to deal with this problem:

These tasks resemble the task faced by Hercules in the Augean stables, and in a British Medical Journal editorial provocatively entitled 'Kitemarking the West Wind', (1) Tony Delamothe, who has led the BMJ's excellent Web initiatives, argued that hallmarking was probably an impossible exercise. He cited as evidence the fact that one study conducted in 1998 had shown that there were, even then, 47 different instruments for rating Web sites, none of which had been tested for reliability or validity, with a further 15 instruments appearing between that study in 1998 and the date of the editorial on 7 October 2000. It is certainly important to flag up high-quality sites, but the responsibility can never be taken away from the reader, and for this reason the Journal of the American Medical Association came up with the principle of caveat lector - let the reader beware.

It is easier if site designers concentrate not only on usability but also on accuracy, using a tool such as DISCERN when creating sites. So far as content is concerned, perhaps the simplest step is to ensure that patients and clinicians have access to the same knowledge.

3.1.3 Clinicians and patients should have a common knowledge resource

Hitherto, sites for the public have been prepared separately from sites for professionals, but this is illogical because:

  • 5% of the public are at least as well educated as clinicians
  • most healthcare information is relatively simple, and with a little help, many people can understand quite detailed biological information
  • a patient with one problem can spend a large amount of time reading about that problem, whereas the general practitioner has hundreds of problems to cover
  • patients with a rare disease may come to know more about their, or their child's, disease than their family physician, and rightly so
  • the family physician may see one case in a career and most of the care may be provided by a highly specialised service

For all these reasons, it makes no sense to have separate knowledge resources for patients and clinicians. The knowledge resource certainly needs to be made available at a number of different levels, but it could be made available for two different levels of reading, and made available entirely on video for people who cannot read at all.

Similarly, readers could be asked to identify their level of biological knowledge, for example:

  • biology up to O level/GCSE, or
  • biology up to A level, or
  • a biology degree

Every patient and clinician should have access to the same single knowledge resource, and the aim of the National electronic Library for Health (NeLH) is to give clinicians and patients full and equal access to the same resource. It recognises that patients will usually wish to use NHS Direct Online first, but in principle patients and clinicians must have access to the same resource of best current knowledge.

This is necessary but not sufficient for two reasons.

3.1.4 Knowledge about healthcare quality

The decisions patients make about which treatment to choose, based on research evidence, are of great importance. However, for treatments such as surgical operations in which the skill of the clinician, or the quality of the supportive services, determine the outcome, many patients would also like to know how good the clinicians who plan to treat them actually are.

The first step in the provision of information about the quality of clinical practice took place when New York State made the outcomes of cardiac surgery in different hospitals available to the public, albeit only after the New York Times had forced them to do so. The result was that those hospitals with the worst results, usually hospitals which were doing the fewest operations, stopped doing cardiac surgery. In the United Kingdom, information about heart surgery mortality was published for the first time in 2001, with promises of similar data for other operations and services, to help patients decide which hospital to choose.

The interpretation of data is not straightforward, however; surgeons with low death rates may be operating on less severely ill patients, for example. Furthermore, the position of a hospital on a league table can change from time to time, particularly where the numbers of treatments are small; unpalatable though it may be, one-half of clinicians will always be below average, not because care is substandard but because of the statistical facts of life which mean that one-half of any group will always be below average.

In November 2001, The Times published in five instalment its 'hospital consultants guide…in association with PPP Healthcare,' and compiled by Dr Foster, 'an independent company which provides authoritative information about healthcare providers in the UK'. The guide lists consultants with their qualifications and special interests. Some guides also identify some as 'experts' with 'an exceptional record for publishing research in academic journals about their area of interest', but, as yet, publish no figures about the outcome of their treatments.

3.1.5 Necessary but not sufficient

Some patients do not want access to the type of knowledge that is valued by clinicians: they view clinical epistemology as reductionist and positivist and prefer different ways of looking at health and disease. Patients will therefore always want other sources of knowledge.

Knowledge alone will not create the resourceful patient. Patients also need skills.