Using information technology for patient education: realizing surplus value?

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Abstract

Computer-based patient information systems are introduced to replace traditional forms of patient education like brochures, leaflets, videotapes and, to a certain extent, face-to-face communication. In this paper, we claim that though computer-based patient information systems potentially have many advantages compared to traditional means, the surplus value of these systems is much harder to realize than often expected. By reporting on two computer-based patient information systems, both found to be unsuccessful, we will show that building computer-based patient information systems for patient education requires a thorough analysis of the advantages and limitations of IT compared to traditional forms of patient education. When this condition is fulfilled, however, these systems have the potential to improve health status and to be a valuable supplement to (rather than a substitute for) traditional means of patient education.

Introduction

Adequate patient information is important for the quality of care. It is one of the key indicators of patient centeredness and it improves the effectiveness and efficiency of care [1]. Until approximately 10 years ago, patient information was given face-to-face or through different means like paper-based flyers, brochures and videos. Since a few years, computer-based patient information systems (for teaching, decision support, information retrieval, etc.) have become more and more available. These new type of systems, several authors claim, have many advantages compared to the more traditional means used for patient education. The biggest advantage of these systems is that they are able to use more interactive ways of informing patients and are better able to tailor information to the individual needs of patients at less costs [2], [3], [4], [5], [6]. Also, by using advanced search techniques, computer-based patient information systems have the potential to store and retrieve large amounts of information. In addition, computer-based patient information systems offer patients new possibilities of getting in contact with other patients or experts by establishing virtual meeting groups or discussion lists. Though little is known about concrete effects of using these new type of systems, aspects such as patient decision-making and planning, patients’ trust in the caregiver, compliance and patients’ motivation seem to be improved [7], [8], [9].

One of the reasons that there is not much clear evidence of the potential benefits of the use of patient information systems is that few studies focus on the evaluation of computer-based patient education. In a review article on computer-based approaches to patient education Lewis found only 21 research-based reports between 1971 and 1998 that included evaluation findings [10]. In addition, results from evaluation studies of computer-based patient education show different results. Though some studies for example point at improved transfer of knowledge and increased patients’ expertise, others state that computer-based education does not provide additional significant gains compared to traditional forms such as face-to-face education or non-tailored patient information [10], [11]. From the literature, it appears to be quite a challenging task to build information systems that meet patients’ needs. Designers, as Diane Forsyth claims, often hold tacit assumptions about what patients want or need that appear problematic for users [12]. As a consequence, the utility of such systems is strongly diminished [13]. Explicating patients’ needs, however, is not an easy task. To individualize patient education materials, designers must consider the unique needs of the target audience to include culture, age, race, gender as well as social issues and physical and psychological or cognitive disabilities [10], [14].

In this paper, we want to report on two evaluation projects. Though there are differences in the two projects regarding for example the type of information system and the potential user (see further), the goals of the two systems were comparable and the results are complementary. We will show that the failure of both patient information systems was caused by the fact that the designers had not made a thorough analysis of the advantages and limitations of IT compared to traditional means for patient education. As a consequence, they built computer-based patient information systems that did not offer surplus value to the available educational means. Though with hindsight one could state that failure of these two systems seemed unavoidable, this is not the case. Designing successful computer-based patient information systems, we claim, is a very complex task. In order for computer-based systems to be successful, designers have to make use of the specific advantages and limitations of IT. In addition, computer-based patient information systems also have to live up to users’—often high—expectations, partly caused by the rhetoric that is used to persuade patients to use systems.

The first evaluation project was a project of the Rotterdam Eye Hospital [15]. The Rotterdam Eye Hospital is the only hospital in The Netherlands that is specifically oriented towards eye afflictions. One of the most common eye afflictions in children is amblyopia, in which normal vision in one eye fails to develop because of a difference in vision between the two eyes in early life. The affected eye is also called ‘a lazy eye’. The hospital started a project in 1999 to improve the quality of care in terms of effectiveness, efficiency and patient centeredness for children with amblyopia and their parents (see the Section 2 for a more detailed description). Amblyopia can only develop in very young children and treatment has to start as early as possible, but in any case before the child has reached the age of 6 years. Treatment usually involves patching of the unaffected eye. To improve the quality of care the hospital has developed an interactive, computer-based patient information system directed at both children and parents. At the moment that the Internet was becoming a frequently used medium in The Netherlands, the Eye Hospital wanted to find out if using this medium for giving patient information could help improve the quality of care. They chose children with amblyopia and their parents as a target group, because amblyopia is a frequently occurring eye problem and because children and their parents were considered to be a population that were more commonly using computers than for example elderly people. Together with the Dutch Digital Hospital, an organization that develops information technology based communication and information tools, they developed a patient information system. The system consisted of a CD-ROM and an Internet site. The basic material on the CD-ROM had been developed a few years earlier by the Eye Hospital and contained information on the hospital itself, on amblyopia, on the investigations done to establish the diagnosis of amblyopia, on the possible results of these tests, on causes, consequences, treatment methods and possible complications. The information was presented by an orthoptist, an ophthalmologist and the child health center physician in brief video fragments. Other fragments showed amblyopic children and parents speaking about their experiences. In addition, a CD-ROM featured a cartoon about Paul, a boy with amblyopia, who wears glasses and an eye patch.

The Internet site, specifically developed for this project by the Dutch Digital Hospital, contained four parts: a Chat box, a Question and Answer section, a Newsletter and Games. The Chat box afforded virtual contact between the parents and/or the children, supervised by an orthoptist or an ophthalmologist. During the pilot evaluation phase, the users were able to use this facility one night a week, during 1 h. In the Question and Answer section, the users could ask questions to one another. The Newsletter gave general information of the Rotterdam Eye Hospital. The Games consisted of coloring pictures, simple computer games and jokes for children. Both the Internet site and the CD-ROM contained images and voice recordings that made them accessible for parents as well as children.

The second evaluation project was a project of the association of general practitioners in Rotterdam (Districts Huisartsen Vereniging Rotterdam). This association is a regional organization of and for general practitioners and is associated with the national association of general practitioners (Landelijke Huisartsen Vereniging). Four general practitioners of this regional association wanted to know whether it was possible to improve the quality of care in terms of effectiveness, efficiency and patient centeredness (see the Section 2 for a more detailed description) by installing a patient information system (‘Digidoc 2000’) in the waiting room of the practice. They received financial support from the regional organization of general practitioners. A small IT company, together with the GPs, developed the patient information system. The patient information system consisted of a small desk with personal computer with keyboard, mouse and printer. The system had two purposes. First, it was meant to show three kinds of medical information: generic information on common diseases, more in-depth information on specific conditions and a medical encyclopedia. The generic information on common diseases was identical to the paper brochures that are often present in the cupboard in the waiting room or the consultation room. Such information deals with common complaints, treatments and questions, such as lower back pain and its possible remedies. The more in-depth information on diseases is information normally given to the patient during consultation. It contains more medical terminology and specific advice for the individual patient. The medical encyclopedia was designed to be used in an environment where patients could consult the system and also have the opportunity to look up information (books, journals) the system refers to. This system allowed the user to search for both general and more detailed information on diseases, including pictures and short movies. In addition to all this, the system was also to replace the sign where announcements were made about for example holidays and special consulting hours. For this purpose, the designer made a bar that scrolled continuously on the bottom of the screen and showed these announcements [16].

In both projects, the initiators asked the Department of Health Policy and Management of the Erasmus University Rotterdam to evaluate the effects of the system on the quality of care. Both projects served as a pilot for us to investigate the possibility and feasibility of a larger study, and for the initiators to decide how to ‘scale up’ the projects. The project for children with amblyopia and their parents was to be followed by a randomized controlled trial to prove the increased effectiveness, efficiency and patient centeredness that this system would bring. The project for patients in the waiting room of the general practitioner was to be followed by implementation in more practices of general practitioners in Rotterdam. We were interested in conducting these evaluation studies because exactly such explorative studies (small scaled and with a primary focus on qualitative methods) can teach us about the experiences of patients with novel ways of employing information technology and the reasons for (not) using it.

Section snippets

Methods

The impact of information systems on the quality of care delivery is often measured primarily by looking at the effectiveness of the care provided. Here, quantitative evaluation approaches are the implicit golden standard [17]. For example, information systems designed to improve decision-making by doctors, so-called Clinical Decision Support Systems (CDSSs), are often evaluated by the amount of times that the system can identify the right diagnosis, or the rate in which it outperforms the

Results

In the first project, 14 families participated, with a total of fifteen children with amblyopia. The average age of the parents was 35 years; the mean age of the children was 4.9 years. Two of the 15 children were ‘new’ patients (being in treatment less than 3 months) at the moment of joining the project, the others had been in treatment for a longer period of time (with an average of 24 months). Most of the parents were highly educated: in 9 out of 14 families at least one of the parents had a

Discussion and conclusion

In this paper, we discussed two computer-based patient information systems. Both systems were meant to replace already existing, traditional means of patient education such as brochures, leaflets and to a certain extent face-to-face communication. Both systems, however, were hardly used; when they were used, the patients were predominantly dissatisfied. In our analysis, we showed that the information systems failed because the emotional and cognitive content of the information was not geared

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