A C Jariwala, C R Paterson*, L Cochrane , R J Abboud, C A Wigderowitz
Department of Orthopaedic and Trauma Surgery and * Division of Medicine and Therapeutics, University of Dundee
Correspondence to : Dr Carlos A Wigderowitz, Department of Orthopaedic and Trauma Surgery , Ninewells Hospital and Medical School, Dundee DD1 9SY Email: cawigderowitz@lineone.net
SMJ 2005 50(4): 169-171
Abstract
Aim: To assess the value of directing the attention of patients to sources of medical information on the internet. Design: Prospective qualitative study in an orthopaedic outpatient clinic. Participants: 253 patients agreed to complete electronic questionnaires before and after reviewing information relevant to their conditions on the internet. Patients were allocated randomly into two groups; one group was given indications of general sites and the other recommended specific non-commercial sites. Completed questionnaires were received from 44 patients. Results: 95% of the patients found the internet information easy to understand and 84% said that it was helpful for coping. 86% of the patients were satisfied that their current treatment was appropriate in the light of what they had learned from the internet. Ten patients out of the 36 who expressed a view thought that the internet information contradicted that provided by the doctor. Despite these results most patients still said that the doctor represented the best source of patient education. Conclusions: Increasing numbers of patients are familiar with the internet. Most of our patients felt that the internet was, on balance, helpful in providing information. The main difficulties with the internet are the sheer volume of information, the potential for misleading and the danger of misunderstanding. We feel that there is a real place for the specific prescription of an internet site by a clinician who has personally reviewed it to a patient thought to be able to benefit from it.
Keywords: Patient education, websites
Introduction
For many years, printed or duplicated information sheets have been used to provide patients, particularly outpatients, with fuller details of the implications of the diagnosis, of the practicalities of the proposed treatment or of the investigative procedures advised. In practice, the leaflets, whether ‘home made’ or provided by an outside body, are given out with the implicit and often explicit approval of their contents by the clinician involved. In this traditional model of patient care, the clinician is in charge of the provision of information.
The availability of the internet has transformed the ability of patients to obtain independent information. In one recent survey in the United States, 52 million adults had used the internet to obtain medical information which is available on as many as 100,000 health-related sites.1 Inevitably, the relationship between clinician and patient is affected; patients may use information derived from the internet to challenge the suggested diagnosis or the proposed treatment. They may take internet-derived material to their clinicians for comment.2,3
The internet provides much information that has not been subjected to any sort of peer review and may include large amounts of material provided with an ulterior motive in the promotion of particular drugs or services. Internet users have no easy way of distinguishing such sites from those provided with altruistic motives, such as Medline Plus,4 the website of the American Academy of Orthopaedic Surgeons (AAOS)5 or, more recently, the BMJ Publishing Group.6
We felt that it was important to explore the potential value of encouraging patients to use the internet to obtain additional information about their diagnosis and treatment. In an earlier study, we found that only 50 per cent of patients attending our orthopaedic service had used the internet and only 10 per cent had actually sought information specific to their diagnosis.8 We undertook a prospective study of the willingness of patients attending an orthopaedic clinic to use the internet to amplify their understanding of their conditions. Can websites be ‘prescribed’ for this purpose to save the clinician time?
Methods
A total of 550 patients aged 10 years or more were interviewed personally by ACJ while they attended our orthopaedic out-patient department. They were asked about their access to the internet and 257 had access. Of these 253 agreed to participate in the study.
Each participant was given a patient information leaflet providing details of the procedure for logging on to a specific website through which they could provide information for our survey. The leaflet emphasised that the information was anonymous, that participation was entirely voluntary and that they were free to withdraw at any time without giving a reason and without affecting their subsequent medical care.
The patients had the full range of range of diagnosis typical of a general orthopaedic clinic including osteoarthritis of the hips and knees, chronic back pain, neck pain, ankle strain, rotator cuff tendonitis, shoulder pain, carpal tunnel syndrome and plantar fasciitis. Patients being followed up after hip and knee replacements were also invited to take part. The study was approved by the Tayside Committee on Medical Research Ethics. Informed consent was obtained; children between the ages of ten and eighteen were also required to obtain consent from their parents.
Patients who visited the website were initially asked whether or not they had previously used the internet in seeking health information. In this way, they were divided into two groups, ‘medical internet users’ and ‘medical internet non-users’. Patients in each of these groups were divided randomly into two sub-groups, ‘general’ and ‘specific’. The programme provided clear instructions at every stage. Once the patients had logged in they were taken through the pre-internet questionnaire and then presented with the website group to which they had been randomly allocated.
The general group members were asked to look up their condition using general sites such as www.google.co.uk and www.ask.co.uk. The specific group were told about particular, non-commercial sites such as that of the AAOS (www.orthoinfo.aaos.org) and Medline Plus (www.medlineplus.com). After the internet search they were invited to complete a second questionnaire.
The initial questionnaire recorded demographic details and the diagnosis as understood by the patient. Also identified were particulars of how the information currently used by patients had been gathered (either by traditional methods or from any previous internet searches) and how valuable it had been (for example, in helping patients to understand their illnesses and to cope with them). The second questionnaire recorded the same information after the patient had sought information from the general or specific websites. In addition the patients were asked whether the new information was consistent with what the clinician was recalled as having said. They were asked to grade the internet material in relation to other sources of medical information.
Results
Of the 253 patients who had initially agreed to participate, only 44 provided completed questionnaires. Of these 17 were medical internet users and 27 were non-users (Table I). There was no difference between the two groups in terms of their self-reported regular use of the internet. One third of the ‘medical internet non-users’ were not aware that medical information was available on the internet.
In both groups, a large majority of patients (81%) indicated that they desired additional information concerning their conditions. Patients in both groups were asked for their evaluation of the internet information obtained through the prescribed search engines and websites. Their responses are summarised in Table II. The denominators are reduced if the patient did not answer a particular question or if no response was applicable when the patient had not found any information on his or her condition on the internet.
Most patients found that the internet information was easy to understand and helpful for coping. A smaller proportion felt that the information reduced anxiety. Most patients felt satisfied that their current treatment was appropriate in the light of what they had learned from the internet. Ten patients out of the 36 who expressed a view reported that the information gained from the internet contradicted that from the doctor. There was no way to determine whether either was incorrect or whether either had been misunderstood.
The views expressed by the ‘medical internet users’ and the ‘medical internet non-users’ were similar and there were no apparent differences between the responses of those who used the ‘specific’ sites and those who used the ‘general’ sites. Because of the small numbers involved, statistical treatment of these observations is not appropriate.
Opportunities were provided in the questionnaires for free comment. Twenty-four patients made comments. Two felt that doctors did not have enough time for them and wished to have more detail about their conditions. Five patients expressed concerns about the pitfalls of the internet, including the dangers from too much information, from self-diagnosis or mis-diagnosis, and from failure to understand the terminology. Twenty-three of the 24 patients who provided comments stated that internet information was helpful. However several pointed out that, because of the large number of sites, particular websites should be recommended, perhaps using handouts. Two of the younger patients requested sites that were easy to navigate and dealt with adolescent conditions.
Patients were also asked what they thought was the best method for patient education. A total of 22 patients specified the doctor, nine said handouts, seven the internet and three patient groups. Three patients did not answer this question. Patients were asked which websites they found most helpful. Among the 21 directed to general sites six specified Google, three ask.co.uk and six other sites. Of the 23 directed to specific sites, eight favoured the AAOS site, seven Medline Plus and one both.
Discussion
We are aware of no previous prospective study of the value of the routine ‘prescription’ of internet information for patients attending a clinic. One limitation of our study is that only 44 patients returned questionnaires. However it should be noted that the patients had no incentives to do so other than the possible benefit of the provision of information helpful to their understanding of their conditions. We cannot determine how many patients explored the appropriate websites without completing our questionnaires.
It seems likely that much greater use could be made of the internet in patient education.9 In a recent study, in Tayside, 50 per cent of patients attending an orthopaedic clinic were familiar with the use of the internet.7 Similar findings were obtained in a recent study of patients with melanoma.10 The implication is that a large proportion of our patients already have the basic skills to benefit from the prescription of an internet site.
The internet could be particularly valuable for patients with uncommon diseases for which many clinicians have less appropriate information to hand than a well run and responsible patient organisation.11 In the UK useful sites are provided by Patient UK and by Contact a Family.12,13
Formal evaluation of medical websites has shown that many sites had serious limitations. In studies of information concerning the carpal tunnel syndrome,14 lumbar disc herniation15 and retinopathy of prematurity16 it was found that much of the information was of limited quality and poor value to patients. The incidence of real harm resulting to patients from the use of the internet may be small,17 but there may be significant under-reporting of cases. Despite that, most of our patients found that the websites they reviewed were, on balance, helpful in providing information about their conditions.
We feel that the internet can be an efficient and useful aid in the provision of patient education. The prescription of a website requires a good knowledge of the individual patient as well as a familiarity with the website suggested. As with drugs, there is much to be said for the advice of Lewis18 who wrote: ". . . do not offer medical advice to someone you personally have not seen, physically touched and examined in real time. It is important to recognise that ‘the computer is not a substitute for a physician." 19
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