Health-care and the advent of the Information Society
This essay was written by Frank Norman and was first published in the 1999 Mill Hill Essays.
Health-care information is all around us – in books, magazines, leaflets, TV and radio programmes, advertisements. We just can’t get enough of it. It is not surprising, then, that one of the most common uses of the Internet is to search for it. Over the last five years there has been a flowering of high-quality Internet sites providing information on a tremendous range of health-related topics. This has happened thanks to the fortuitous collision of two things: the arrival of the Internet itself, a new and easy way to make information available to a very wide audience at little or no cost, and the consumer health movement, spearheading a new recognition that patients and the public have both a right and a need to be better informed about their health and health-care. There are now many very useful health-care Web-sites, quite a few not-so-useful Web-sites and a thorny problem of how to find the former rather than the latter.
The Internet is a classic case of a technology that has found uses its inventors could never have dreamt of. Originally it was just a means for connecting researchers together, but today it is like a whole set of parallel universes of information used not only by researchers, but also by educational institutions, by government, by commerce, by health-care agencies and by the public. It is easy to access information on the Internet, using the World Wide Web, and it is almost as easy to publish information, after a little training. Web technology has removed the constraints of print publishing and freed all of us to become publishers. On the Web today you can find an extraordinary range of views, opinions and prejudices. To survive in today’s “Information Society” it is necessary to become skilled in handling a wide range of information sources, and this is especially true for health-care information. If I follow some unreliable advice from a Web-site recommending films to see or restaurants to eat in, I may waste my time and money but these negative effects are usually limited. If, however, I act on bad advice that I find on a health-care Web-site then my good health or even my life may be at risk. Health information is important and for this reason many groups are working towards ways to help us find reliable health information on the Internet.
The interest in consumer health information predates the emergence of the Internet and is based on solid clinical and ethical considerations. A medical consultation between a patient and a doctor is an exchange of information. The patients tell the doctors about their symptoms; the doctors offer explanations and treatments for these symptoms. This exchange relies on mutual trust, defined by the doctor-patient relationship – in other words, each must have faith in what the other says. About one quarter of a typical consultation with a general practitioner is spent in giving information to the patient. Informing the patient has an important positive impact on successful treatment. Surgical patients given fuller information before surgery suffer fewer post-operative complications. Patients undergoing radiotherapy experience less emotional distress if fully informed. Information is clinically effective. There is also an ethical requirement for doctors to pass on information to patients. Patients should have a true understanding of their condition and treatment alternatives available to them before consenting to undergo a particular treatment or procedure. This is the principle of “informed consent”. In the United Kingdom the General Medical Council’s principles of good medical practice incorporate the provision of sufficient information. The National Health Service Patient’s Charter also enshrines the right to “have any proposed treatment, including any risks involved…and any alternatives, clearly explained”. There is a shift in health-care from a paternalistic model to one where doctors and patients work together in partnership. Taking a more active role in our personal health care means that we all have more interest in health-related information.
In practice it can be difficult for a doctor to communicate all the information that a patient wants in one short consultation. Patients need to understand what is wrong with them, what treatment options they have, what risks are involved in different courses of action, how they take care of themselves, what the experience of other patients is and what sources of help are available. Printed information sheets that can be taken home and studied at leisure are produced by many hospitals, specialist professional societies, government health agencies, patient groups and medical charities. Such materials are not intended to replace the need to see a doctor, but to improve the patient-doctor interaction. They contain information rather than advice, to make complex health problems more intelligible. They help patients to understand better what questions they want to ask and to make the most effective use of their time with the doctor. Another advantage is that these materials can be easily shared with others who have a need to understand, the patient’s family or carers for example.
Many of these established and well-regarded patient information providers have established Web-sites and have begun to make their information materials freely available through the Internet, adding new features to take advantage of the interactive nature of the Web. At the same time many other Web-sites have been started by new groups and individuals. Some of these may be motivated by dishonesty – snake-oil vendors – some may be just dangerously eccentric in their views. The potential positive effects of greater information availability are in danger of being outweighed by a variety of dangers concerning the quality, appropriateness and context of the information obtained.
Information quality is not an easy concept to define. If we think of information as being the answer to a question then it is clear that the quality or appropriateness of information proffered can only be judged in the context of a particular question. In health-care this will normally be “What is wrong with me?” or “What should I do?”. When a question about a disease is put to a health-care professional they can answer it in full knowledge of the patient’s circumstances and can give further context to their answers. When the question is put to a computer program which searches for the information on the Internet the answer obtained may have no relation to the patient’s circumstances, such as their age, sex or medical history. The answer may also appear out of context – it may be one page extracted from a Web-site where one hundred other pages explain more fully. Even when looking on a Web-site from a reliable source it can be difficult to find appropriate information.
Pharmaceutical companies and other health-care concerns are using the Web to provide information aimed at patients, usually including information about their drug products. This is valuable because one could argue that a drug company Web-site should be the most reliable source of information about their own drugs. However, unless there is some independent validation of the information, a job which should be done by regulatory authorities, we cannot be sure about the impartiality and completeness of the information presented.
Many local and informal patient support organisations use the Web to provide excellent practical advice and support to patients. Some individual patients have created their own Web-sites. The experiences of other patients with a particular condition can provide very personal insights into what it is like to live with that condition. It can be dangerous however to infer too much from an individual case. The fact that a particular treatment or course of action worked for one person does not necessarily mean that it will work for all others.
The global nature of the Web allows information to be retrieved from anywhere in the world. This can be very valuable in giving access to a broad range of knowledge, but can create difficulties. Cultural, environmental and genetic differences exist between different populations and so health-care information intended for one audience may be inappropriate for an audience in an entirely different location and context. Differences in the health-care systems and terminology used in different countries may also make some advice unhelpful or unintelligible. Sometimes these differences can be acute, as when medical practices are tied to particular religious beliefs. “Alternative” medicine and non-Western medicine recommendations may also conflict with orthodox medical practice.
The Internet began life as a research network and it is still an essential information resource for biomedical researchers. But a search by a member of the general public on a medical topic may well retrieve information on current medical research without any explanatory or interpretative details. Taken out of context such information can be quite misleading and patients may get unrealistic expectations about treatments that are still highly experimental.
Access to such a mixture of many different kinds of information is one of the great benefits of the Internet. The experienced Internet user can view information from many different viewpoints on the same topic and perhaps draw something from each. But for an unpracticed searcher it can be confusing. How can I know which information is right for me and which information I can believe? Luckily help is at hand, in a number of forms. There are several services that evaluate Web-sites and act as “gateways” to selected health-care information on the Internet. There is also a service that can help users to evaluate information from Web-sites for themselves. In the future it may be possible to combine these two approaches – to provide third-party evaluations of Web-sites to users in order to assist them in reaching their own conclusions about a Web-site.
The Health Education Board for Scotland maintains a Web-site providing information on a wide range of health topics. The Health Promotion Information Centre is the English national centre for health promotion information and has a similar range of information to the Scottish site. “The Virtual Hospital” is a United States service with a wide range of health-care information, including many patient information resources. In the United Kingdom a new National Electronic Library for Health is being created by the National Health Service. One component of this new library is the “NHS Direct Online” service, launched in late 1999, which contains information about services provided by the National Health Service, about healthy living and about illnesses, disabilities and treatments. “NHS Direct Online” also includes a gateway to other relevant and reliable Web-sites containing information on designated subjects. “Patient UK” is maintained by two general practitioners and includes links to information about health related issues, including many factsheets on specific issues. “Healthfinder” is a United States government site with links to government agencies, voluntary groups and professional organisations. “MedlinePlus” is produced by the United States National Library of Medicine and has many specific links to information on specific diseases and conditions. “OMNI , Organising Medical Networked Information” is a United Kingdom gateway to good quality biomedical and healthcare information, not aimed specifically at patients but containing much of interest. All these gateways take care to screen the Web-sites that they link to, and they make it possible to search for a particular health topic or to browse through a list of available topics. They also maintain their collections of links to ensure that they stay current.
In order to select Web-sites to be included, most gateways have drawn up explicit selection criteria, some of them very detailed, to guide the process. Many of these selection guidelines agree on the key criteria for evaluating health related Web-sites. The most frequently used criteria concern the site’s content, design and aesthetics, disclosure of authors, sponsors, or developers, currency of information, authority of source, and ease of use. More recently health information researchers in the United Kingdom have developed a system which will “enable patients and information providers to judge the quality of written information about treatment choices”. This system, called DISCERN, has been reliably tested and is the best guide to judging consumer health information content in Web-sites. It comprises a series of questions with guidance notes explaining how to answer the questions, enabling anyone to form an opinion about a particular document or Web-site. There is now a well-designed online version of DISCERN which is available for anyone to use. It remains to be seen how widely it will be used by non-specialists who may not have the time or inclination to undertake their own exhaustive evaluations.
Gateways are good ways to find reliable information but are less useful for providing reviews of sites. If a user independently finds a Web-site they are unlikely to want to check whether it is included in a gateway before using it. They are even less likely to check in several gateways, to form a balanced view. A new technology called PICS (Platform for Internet Content Selection) makes it possible to provide evaluative information direct to a users’ Web browser. Originally PICS was intended as a means of protecting children from inappropriate material on the Internet, but the technology is flexible enough to apply to any information on the Internet. PICS is a means of creating descriptive records containing information about a Web-site in a structured format. PICS records, or labels, may be derived from the Web-site itself or from independent review services like the gateways mentioned earlier. Several different review services may provide labels for the same Web-site, using guidelines such as DISCERN or OMNI. The user can then view these labels at the time of connecting to a Web-site and can use their recommendations or warnings to form their own judgement about the Web-site. The great benefit of this approach is that it provides a mechanism for medical professionals to guide consumers through healthcare-related information on the Web, while leaving control firmly in the hands of users.
Good health is important to all of us. Reliable health information can play a significant part in health-care and the Web is becoming a very valuable source of health information. People using the Web must learn to look critically at information they retrieve from it, in order to determine how credible it is and how relevant it is for their particular condition and circumstances.