The World Wide Web as a medical information source for Internet users – benefits and boundaries

The World Wide Web (WWW) and its growing use as a medical information source

The Internet has been called a ‘network of networks’, linking millions of computers worldwide for communication purposes. Originally developed in 1969 for the US military, it gradually grew to include educational and research institutions. Today, a large number of commercial industries, corporations and residential users communicate using the Internet. The WWW is a collection of interactive documents accessible via the Internet – a quasi-virtual library.

The difficult task of estimating how many people are online throughout the world yields inexact results at best. Surveys have attempted to measure the number of Internet users by applying a variety of measures. However, in 2002 the NUA Internet market research company, an authoritative online source for information on Internet demographics and trends, made an estimate based on data from the majority of published surveys that suggests that the Internet has approximately 605.60 million users, most of whom live in developed countries.¹ Recent studies suggest that between 36 and 55% of Internet users access the WWW to gather medical information, which is likely to affect their choice of treatment.²–5 Females are more likely than males (75 vs. 64%) to search for health information online for personal use or for friends and family.⁶

One of the reasons users consult the Internet for health information is to take a more active role in planning their treatment. Patients increasingly expect high levels of choice, control, customer service, interaction with their healthcare providers and access to health information. Internet users search websites to seek: (i) information about a condition; (ii) information about a treatment; (iii) information regarding symptoms; (iv) advice about symptoms; (v) advice about other treatments.⁷

A recent qualitative survey involving six focus groups established how consumers search for information on medicines and therapies on the Internet.⁸ Participants reported using general search engines, such as Google or Yahoo, the choice of which is often determined by factors such as the workplace or educational environment, or suggestions by family or friends.

Benefits and boundaries of the WWW in health care

On some community health websites patients have the option to create and join online forums that provide peer support where patients can share their experiences and personal stories, and exchange information about the latest research. The Internet ideally acts as a channel for healthcare information and communication and is inexpensive, easy to use, provides a diversity of health information and connects people with common interests. E-mail contact between practitioners and patients has been suggested to be of benefit for patients with chronic conditions but raises a whole different set of issues.⁹

In four research projects we assessed CAM practitioners’ E-health advice over the Internet by posing as a patient with a query (group A) and posing as a researcher (group B).¹⁰–13 We wanted to know how valuable the information given by CAM practitioners is regarding efficacy and safety, and how the response rates differ from posing as a patient vs. posing as a researcher. We contacted medical herbalists, chiropractors, acupuncturists and reflexologists. The overall results showed that the response rates and nature of recommendations varied greatly according to blinding and we concluded that Internet advice given by complementary practitioners does not always seem to be evidence-based and has the potential to put patients at risk.

Inaccurate or irrelevant information found on the Internet and delivered to healthcare practitioners has been shown to harm health care, health outcomes and the patient–practitioner relationship.¹⁴ Some practitioners complain about the occasional visit in which patients bring notes of printed Internet information and pile them up on the practitioner’s desks, expecting an answer to every query they have. Patients can be reluctant to take on the responsibility implicit in the notion of patient choice informed by the Internet, and still prefer the face-to-face consultation and advice provided by trained healthcare practitioners.¹⁵ Those who do seek online information often have insufficient ‘information literacy’ to interpret what they find. In an online US survey assessing the credibility, accuracy and readability of online health information, involving over 3000 complete responses of healthcare information users, 65% of participants agreed that the accuracy of online health information needs to improve and 65% thought that the quality of the information needs to be raised.⁶ Fifty-one percent had difficulty separating credible online health information from that which is not trustworthy.

In our own research, we raised this issue and assessed Internet websites for cancer, depression, diabetes and HIV/AIDS.¹⁶–19 We found reasons for concern regarding recommendations on CAM issued on websites for patients suffering from all these conditions. We devised a research strategy to identify some of the main websites that patients with these conditions were likely to consult and evaluated these sites according to the following criteria:¹⁰ advice regarding conventional therapies, number and nature of CAM recommended, advice on disease prevention, and an overall judgement by the present authors regarding the safety of the advice provided.²⁰ In total we assessed 83 websites. The results showed that in excess of 500 different CAM treatments were recommended with little consensus between different sites. Our findings also confirmed the notion that some websites are likely to harm patients through misinformation or discouragement of conventional therapies.²¹ We found 12 websites that overtly discouraged patients from using conventional treatments and 21 websites were graded as unsafe or possibly unsafe by us. Many websites recommended types of CAM for which there is no evidence of efficacy.²² We concluded from these preliminary data that websites on CAM can represent a risk to the user. In the interest of our patients we should find ways of making the Internet a safer place. One way of achieving this is better regulation.

Appraisal of websites

Users’ appraisals of the information available online varies. While some people regard information by pharmaceutical companies as the ‘official’ information on medicine, others prefer what they consider to be an impartial source, such as governments, health organisations and educational institutions. Despite growing familiarity with the Internet medium, many users express the view that information quality is substandard. The very qualities that potentially make the Internet a valuable source of useful medical information and support to healthcare consumers and professionals worldwide (its decentralised structure, global reach, democratisation of publication and immediacy of response) also make the Internet a potential channel for misinformation and evasion of regulation.

When assessing a website, some basic questions (adopted from the MEDLINEplus guide to healthy web surfing) should be asked: (i) Who is responsible for the content? (ii) Does the site have an editorial board? (iii) Is the information peer-reviewed before it is posted? (iv) Does the site make health claims that are too good to be true? (v) Does the information deliberately use obscure ‘scientific’-sounding language? (vi) Are quick, dramatic or miraculous results promised? (vii) Does the site identify the author? (viii) Is the information current? (ix) Who pays for the site? (x) Does the site have a privacy policy?²³

Consensus: focus on regulation

It is increasingly apparent that the Internet is presenting a major challenge to individuals, communities and societies; a challenge that is only beginning to be addressed and one that has already had profound impacts on health care. It can act as a resource for health information, as a medium for interaction and as a tool for the delivery of health care, i.e. by online consultations and e-mail communication. On one hand, patients can be empowered and educated to take a more active role in the healthcare decision-making process; on the other hand, patients are presented with an overwhelming mass of information of widely varying quality. The solution lies in the active regulation of healthcare information, for instance by applying a ‘seal of approval’ such as the Health on the Net (HON) code of conduct.²⁴ It is the mission of the HON Foundation to guide the growing community of healthcare consumers and providers on the WWW to sound, reliable medical information and expertise by encouraging providers to rate their own contributions or to comply with codes of conduct (in the case of CAM this code of conduct is outlined in the BIOME guidelines²⁵). Only when online healthcare information meets minimum standards backed up by a reliable seal of approval can patients and practitioners safely make full use of the potential offered by the Internet.

References

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