More than just a pamphlet: development of an innovative computer-based education program for cancer patients

Patient Education and Counseling 44 (2001) 271±281

More than just a pamphlet: development of an innovative computer-based education program for cancer patients Jennifer M. Jones*, Joyce Nyhof-Young, Audrey Friedman, Pamela Catton Department of Oncology Education, Princess Margaret Hospital, University Health Network, University of Toronto, 610 University Avenue, 5-606, Toronto, Ont., Canada M5G 2M9 Received 15 August 2000; received in revised form 30 November 2000; accepted 14 December 2000

Abstract Patients with cancer continue to lack practical information regarding their illness and report low levels of awareness and use of patient services. The challenge to educators is to ®nd cost-effective and timely ways to deliver a complex mix of interesting and high-quality information and expertise to this large and diverse audience, while still tailoring the content to individual needs and situations. In the present article, we describe the Princess Margaret Hospital (PMH) computer-based patient education program. The program is aimed toward empowering those dealing with cancer and provides comprehensive medical information and support via an interactive Intranet web site containing information about cancer (the Oncology InteractiveTM Education Series), library resources, Internet links, information about PMH services, and a hospital calendar of events. Preliminary evaluation results have provided valuable direction for on-going program development and suggest that the program is easy to use, informative, and enjoyable for patients, families, volunteers, and health professionals. Published by Elsevier Science Ireland Ltd. Keywords: Patient education; Oncology; Computer-based education

1. Introduction In the last decade, there has been an explosion in the availability of interactive computer technology claiming to provide educators with new tools for effective patient education. Indeed, few innovations in patient education have captured the imagination and interest of educators more than computer-based learning. This trend shows no signs of abating, especially given the growing acceptance of web-based informal learning by patients with cancer, who are becoming increas-

* Corresponding author. Tel.: ‡1-416-946-4501/ext. 5533. E-mail address: [email protected] (J.M. Jones).

ingly sophisticated in their search for timely, accurate, and practical cancer-related information [1]. 1.1. Hospitals and patients learning together The shift in emphasis to computer-based learning for cancer patients has been prompted by at least three trends both within and outside the walls of the hospital. First, hospitals are responding to the public's demands for information and support, rather than simply telling the public what the hospital assumes it needs to know for successful cancer treatment. The relationship between hospitals and their public is an interactive one, and patients with cancer are indicating that they wish to receive all information, both good

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and bad, regarding their illness and its treatment [2±4]. In turn, hospitals are carefully considering how they might better assist patients in comprehending and organizing the information they receive and examining new methods of providing patient education that will improve not only their own practice, but also the ways that people cope with their disease [5±6]. Patients and their families are demanding more information about their health and are showing increased sophistication and desire to understand and participate in their own care and treatment decisions [7±9]. Those facing cancer want to be informed and involved in treatment of their disease, and are expressing a need to receive honest, accurate, and timely information throughout their disease course [1,4,10±12]. Similarly, patient educators recognize that, as with other diseases, what patients with cancer know about their disease can affect treatment and the ways that they cope with their illness [5,13±30]. Providing information to patients with cancer can improve treatment compliance and satisfaction with care [22], lower anxiety [16], and improve the ways that they cope with their disease [5,6,31,32]. Unfortunately, cancer patients tend to lack practical information regarding their illness, report low levels of awareness and use of patient services [33,34], and are often dissatis®ed with the information and support that they do receive [33±35]. In response, educators, health care professionals, and patient advocates are developing better ways to inform patients and their families about their medical conditions, treatment options, and self-care [9,36]. 1.2. Increasing the accessibility of patient education In a second trend, popular movies, television, science centers, the Internet and other media are presenting informative and lively stories of cancer and its treatment that are often far more accessible (and sometimes factually much less accurate) than what hospitals have to offer (see also Arnold [37]). The world wide web, for example, is becoming a common source of all types of information for the public, and is fast becoming a major information source for people dealing with cancer. The increasing in¯uence of these public media is leading hospitals to consider how they might present information, ideas, and support to cancer patients in a more entertaining fashion. Traditional, ``one size ®ts

all'' factual and written information is becoming inadequate to address the speci®c needs of very diverse and multicultural patient audiences. The challenge for patient educators is to ®nd costeffective and timely ways to deliver a complex mix of engaging, interesting, and high quality information and expertise to a large diverse audience, while still tailoring the content to individual needs and situations. Transmitting health information in meaningful ways to divergent groups of people with different learning styles, prior knowledge, cultures, and language skills is challenging even in more ideal circumstances [38]. When target audiences are also coping with a diagnosis of cancer and the accompanying stress, fatigue, anxiety, and attention de®cits [39], obstacles to successful patient education can sometimes appear insurmountable. Traditionally, one-on-one and group teaching have been offered in larger clinic and hospital settings, but this requires space, resources, and a substantial amount of professional time and teaching expertise. Miscommunications and misunderstandings may still result because a patient's needs for further explanation are not always obvious to the physician [40], and patients tend to forget or misunderstand much of the oral information they receive during clinical encounters [41]. Patients continue to report being unhappy with the information they receive from their physicians [42]. Standardized information presented in the form of handouts, brochures, books and videos can minimize the variability in the delivery of health care education and reduce the time spent by health care providers. However, these materials are also passive media, often expensive to re-order or update, and depend on patients being functionally literate. Almost one-fourth of people in North America are functionally illiterate [43,44], and often they do not relay their inability to read to their health care providers [45]. In Canada, for example, 22% of adults are unable to read the labels on medicine bottles, and an additional 26% are only able to read very simple information presented in a familiar context [43]. 1.3. Computer-based patient education: an exciting and emerging ®eld Third, the effectiveness of a well-designed, computer-based program for the education of patient

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populations is increasingly well documented [46]. For patients with cancer, the bene®ts of computer-based education and support may include information on prognosis, information on treatment options, and information on available services, including day care for children, rehabilitation and occupational therapy, vocational training, cosmetic services, and social and emotional support [47]. The availability of new computer technology has resulted in substantial interest in the use of interactive computer technology as a tool to facilitate learning in diverse patient groups. Interactive computer-based education programs allow different types of information to be integrated into a single program, including videos, text, animation, graphics, pictures and graphs, and audio. This variety of interactive multimedia components can empower and motivate individuals with a range of different learning styles, especially those who experience dif®culty learning from written materials. Patients who are illiterate or low-level readers, have English as a second language, and those with visual and audio impairments can bene®t from the multimedia features offered by computer-based education, including self-paced learning and review, information print-outs, interactive graphics and animations, and closed captioning and narration. At all levels of patient education, the well-designed interactive computer program appears to be at least as effective, if not more effective than, traditional methods of teaching [25,48±53]. For various other illnesses, the effectiveness of computer-based education has been demonstrated for tasks including teaching self-care [49,54±57], providing medical information and support [28,49,58], improving preoperative and post-operative management [59], and promoting patient decision making and quality of life [60±62]. Computer-based teaching has also been shown to impact on various health outcomes [28,30,61]. In a recently completed review, Lewis [46] identi®ed 66 articles published between 1971 and 1998 that related to computer technology in patient education, of which 21 were research studies. Sixteen of the research-based studies had effect sizes (represented as Cohen's d) greater than 0.5, indicating that subjects who used computer-based education had a signi®cant improvement in measured outcomes. A handful of computer-based patient education programs in oncology has been reported in the litera-

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ture. These programs have been designed to assist in areas such as prevention [47,63] and treatment decision-making [60,64] and to provide support and basic medical information about cancer and its treatment [48,58,65±69]. Although the ®ndings have been promising, only a few of these programs have been evaluated using randomized controlled studies [58,69]. The use of computer technology in patient and science education is clearly an exciting, but newly emerging ®eld, and the research on its impact on informal patient learning is still very preliminary [46,70]. As demand for CD-ROM and web-based learning for patients grows, so too does the need for systematic evaluations of these new informal learning environments [71]. Therefore, as hospitals move into more technological modes of patient education, it becomes critical to continuously reevaluate our methods of working and thinking, and to learn from the experiences of other institutions of informal learning such as museums and science centers [38]. The remainder of this paper will, therefore, describe the timely issue of the development and evaluation of an innovative Intranet-based patient education program in oncology in a hospital setting, and brie¯y highlight the resources needed to support this program. Our goal is to capture the human complexities of the pedagogical, technical and organizational issues inherent in computer-based, informal learning by patients in hospitals, and to illustrate the importance of mixing quantitative and qualitative evaluative methodologies in our continued efforts to meet patient needs. 2. Princess Margaret Hospital computer-based patient education Princess Margaret Hospital (PMH), a member of the University Health Network, is a large comprehensive cancer center located in Toronto, Canada. Over 10 000 new patients are assessed annually, and 1000 patients come to PMH daily for outpatient treatments or follow-up. Each patient comes to the hospital with unique experiences, knowledge, and degrees of understanding of the cancer with which they are dealing [72,73]. Each also arrives with a different set of

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expectations and anticipated outcomes for their visit. These in turn are in¯uenced by the physical characteristics of the hospital and who is accompanying them on the visit [74]. Together these variables merge to create an agenda for the visit and the learning they will undertake. The learning that our users ultimately accomplish is primarily the consolidation and slow incremental growth of the existing ideas and information that patients already have, rather than the acquisition of new ideas, facts, or information. It is a continuous, dynamic process of assimilating and accommodating information within social, physical, and psychological contexts [73,75,76]. In other words, the knowledge our patients and families construct is strongly in¯uenced by physical settings, social interactions, and their personal beliefs. All three of these variables contribute signi®cantly to a patient's hospital experience, and are targets for intervention. Our goal as patient educators is to address these variables and to make the hospital learning experience as socially, physically, intellectually, and emotionally rich as possible. Therefore, in an effort to provide patients and their families with exemplary and personalized patient care, to foster excellence in teaching, and to promote patient learning and understanding, educators and clinicians at the Princess Margaret Hospital along with a multimedia development company have developed an interactive computer-based patient education program using both web-based and CD-ROM technology. The PMH patient education web site is an interactive computer-based patient education program aimed toward empowering those dealing with cancer by providing information, tools, and support. It is a user-driven site supported by trained volunteers, in which users can move around freely and at their own pace and determine what they want to see. 2.1. PMH patient education web site: format and design The PMH patient education web site is a hospitalbased Intranet site, and is accessible on each of the computers in the patient and family resource centers located throughout the hospital and in the main PMH patient and family library. The web site consists of six modules (see Fig. 1) including

1. About your cancer Ð houses the Oncology InteractiveTM Education Series (OIES), an interactive multimedia software program for patient education and support. The OIES was developed by jack digital productions in collaboration with Princess Margaret Hospital. Users are able to choose from a menu of 20 cancer site-speci®c titles (i.e. breast, skin/sarcoma, lung). Each multimedia title provides site-speci®c information about disease prevention, early detection, symptoms, diagnosis, stages, treatment options, nutrition, pain management, new research, psychosocial care, and community support services, and provides answers to a number of frequently asked questions. Additional program features include integrated Internet updates to ensure that the information remains current, bookmark and history list features, and vetted Internet links. In order to enhance understanding and retention of the materials, the development team designed a visually and graphically rich interactive learning environment and worked to address the range of learning styles, computer experience, abilities, literacy levels, and language skills exhibited by our diverse and multicultural target audiences. Information is provided in an interactive, usernavigated format that includes video interviews with cancer survivors and family members, animation, moveable virtual reality, narration, closed captioning, text and/or audio, and an audible glossary. The interactive multimedia program allows users to engage in meaningful learning by selecting only those presentations that most effectively link new information to their existing understandings and experiences. Animations, for example, offer stimulating and accessible introductions to key concepts. Interactive, animated diagrams and informative diagnostic imaging bring dif®cult concepts to life. The graphics have been designed to be a visual guide that directs the learner through dif®cult concepts, and the images have been designed to be representative, rather than photographic in order to isolate, clarify and demystify important structures for the user. Patient testimonials add a powerful affective aspect to the learning environment and make information accessible by grounding it in concrete situations.

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Fig. 1. Princess Margaret Hospital patient education web site.

The complexity of the material in the OIES required careful consideration and design by developers to ensure that users can easily access information in meaningful ways. The software accommodates different user search abilities and preferences by providing a variety of navigation features, such as a comprehensive table of contents, menu system, keyword search function, and user bookmarks. The question and answer mode provides an additional, pre-set navigation

path for users to access essential information quickly, thereby accommodating the needs of a clinical setting and minimizing information overload. The assumption that interactivity and choice support learning informs every aspect of this software design. The user continually drives the program to facilitate self-directed learning. Each title holds approximately 1 GB of data and provides approximately 18±25 h of information. Typically, each title required 4000±7000 h of

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3. 4. 5. 6.

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development time, tremendous commitment, and a coordinated interdisciplinary collaboration with health care providers at PMH and the development/production company. The development company also employs a team of writers, editors, animators, computer programmers, videographers, etc. who have met with upwards of 400 health professional staff and patients at PMH. In turn, staff members provided extensive clinical content and exercised editorial control in order to ensure project uniformity and quality. Throughout development of the OIES, the series was focus tested with patients, staff, public, and patient educators. Patient and family libraries Ð stores and indexes hospital publications using In Magic1 DB/TextWorks1. Users can access the on-line catalogue for the patient and family resource centers collection of books, videos, audio-tapes, and pamphlets. The on-line catalogue provides various search ®elds (i.e. title, author, subject, publisher, language, material type) to search for information. In addition, this service provides patients with a list of vetted Internet links to other cancer-related resources that are accessible from the computer. The links provided include: cancer-speci®c sites; reference links; general medical links; general cancer links; alternative medicine links; journals and newsletters links; health search engines; support group links; cancer center links; pain management links; multicultural health resources links. In addition, links are provided to explain how to evaluate information on the Internet. Discover more interesting information Ð provides users with information regarding PMH services, support groups, and information sessions. Upcoming events Ð contains the PMH calendar of events, listing upcoming events at PMH. About patient education Ð provides users with the Mission Statement of the Patient Education Department and contact names and numbers. About the PMH foundation Ð contains an overview of the Foundation's mandate and provides contact names and numbers.

2.2. Patient and family resource centers In total, 15 patient and family resource centers have been established within the cancer site-based waiting

areas throughout PMH to provide appealing and easy access to the PMH patient education web site. Each resource center is a smaller satellite of the main patient and family library, and is comprised of custom mill work to house the computer hardware and multimedia resource collection (including pamphlets, books, videos, and computer software). Ergonomically designed workstations include comfortable seating for two to encourage conversation between users (and with volunteers), a large-screen computer, keyboard and mouse, and dual headphones for private listening. The centers are located in waiting rooms and are clearly visible and easily accessible to patients and families. How patients behave and what they observe, learn, and remember in the hospital are strongly in¯uenced by the physical context [74]. By strategically locating the patient and family resource centers in these waiting areas, patients and families have easy access to resources in a friendly, supportive environment where waiting time can appear to pass more quickly, socially, and productively. 2.3. Volunteer support Volunteers are often used in cancer centers to supplement the work of professional staff in providing emotional support to families and patients [77]. Our efforts to provide responsive and immediate human support to users of the computer-based education program have resulted in the evolution of an ambitious and unique volunteer-assisted learning and support strategy. Volunteers have been recruited and trained to assist users of each patient and family resource center, based on the assumption that such personal assistance increases the likelihood that a learning experience will be both memorable and supportive. In a strong collaborative effort, the departments of Psychosocial Oncology, Volunteer Resources, and Patient Education, and Wellspring (a community organization with an expertise in peer support training) all partnered in the development of this volunteer-assisted initiative. A comprehensive volunteer training program has been designed to provide volunteers with the technical and psychosocial skills necessary to support users in each resource center. Volunteers receive a take-home manual, three half-day training seminars, and 9 h of computer practice, role play, and evaluation. They are also instructed on how to provide

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computer assistance to users, manage resources, and support patients in a manner that demonstrates respect, compassion, and empathy. To date, 35 volunteers have been trained [78]. 3. Program evaluation As with other educational interventions, interactive computer-based health education and interactive health communication clearly have the potential both to bene®t or harm patients. Inaccurate or inappropriate health information and poorly designed applications are not only ineffective and inequitable, they are potentially damaging, and can result in detrimental outcomes such as receiving inappropriate care, losing trust in health care providers, or delays in seeking necessary health care [79±81]. Therefore, evaluation of computer-based education and communication applications is essential in order to ensure safety, effectiveness, and quality applications [81]. Formative evaluation is conducted early in the development of an educational program and includes data collection to determine its accuracy, appropriateness, and usability [80]. Formative evaluation also can increase the chance of achieving what was intended and reduces the need for further time and resources in subsequent revisions. The current program of formative evaluation has taken an iterative and participatory approach to ensure that the interests and needs of patients and their families (our target audiences) are being taken into account. During the pre-launch period, researchers blended quantitative and qualitative data collected to determine (1) interface effectiveness; (2) content relevance; and (3) the impact of animations, interactive graphics, and videotaped patient experiences on the learner. This stage of assessment was not intended to serve primarily as an evaluation of the effectiveness of the program, but rather to re®ne the web site and the OIES. The goal was to ensure that the PMH patient education web site was easy for users to navigate, and attractive and useful to all patients regardless of age, education, or computer experience. 3.1. Pilot results During a 6-month pre-launch period, a pilot study was conducted to evaluate the usefulness, ease of use,

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and format of the PMH patient education web site, and to identify any potential errors and weaknesses in the design. First, participants (including patients, family members, oncology professionals, and volunteers) were invited to use the PMH patient education web site and to complete a brief questionnaire in which they provided demographic information and rated and commented on the usefulness and format of the program. In total, 47 users completed the questionnaire. Thirty-®ve percent of the respondents had low to minimal computer experience. Staff users had higher computer experience (P ˆ 0:01) and education (P ˆ 0:01) compared to volunteers and patients. However, ratings of program format and content did not differ among those with high and low computer experience or education. Users from all educational backgrounds found the program to be helpful and easy to use. The OIES was accessed more often than other modules (e.g. calendar of events). Participants also evaluated the characteristics of the program including text, audio, and animation. All participants used the audio and found it to be helpful, and the format was acceptable to the participants. The second phase of assessment included an additional group of 28 users (including patients and family members, technical experts, healthcare professionals, hospital volunteers, etc.) who participated in qualitative, `think aloud' interview sessions. These combined hour-long unstructured, audio-taped interviews with users and observations of their computer interactions. Interviewed users commented extensively on their perceptions of the usefulness and format of the program. The most commonly identi®ed user problem was confusion during navigation through the program. Users with more prior knowledge of cancer topics and computers appeared to have more ready and strategic navigation through the web site. Those users lacking computer and cancer literacy found the assistance of volunteers to be essential for effective navigation. Volunteer support helped them to access information they ``would not have accessed otherwise,'' and is clearly an essential instructional strategy for our program. Four features of the OIES were cited as particularly valuable by users: (1) answers to users' questions; (2) ``wonderful'' graphics and virtual reality presentations; (3) informative animation sequences; and (4) engaging survivor stories. These features appear to empower

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patients and family members by bridging gaps between their understandings of cancer and the medical world as represented by our hospital and illustrate the importance of the affective domain in the acceptance and use of computer-based learning in oncology. The informational and supportive value of the OIES was seen as especially valuable to users. One breast cancer patient explained: ``It [the program] answers questions you forget to ask when you go in to see the doctor. They are so busy. You don't feel that you are taking up valuable time that isn't worthy. You don't feel like you are imposing. It's your time!'' Similarly, a family member observed: ``Having this available and I could keep going back to ®nd out more . . .. The questions don't come all at once. They come in stages, so to have this would be great.'' Those new understandings and answers are then available to patients and family members to inform and clarify their experiences with healthcare providers. ``Wonderful'' illustrations and animations in the and their accompanying narration were seen as especially valuable to visually handicapped users and those with low literacy skills, but desirable by all users. The virtual reality presentations and animations provide an accessible, novel, and easily understood information base from which users can increase their understanding of cancer. Healthcare professionals were also enthusiastic about the clarity of presentation. One radiation oncologist commented: ``Way ahead, I loved the one [animation] where it had the effects of radiation, the rather generic one explaining how radiation works. . .. That was extremely clear and very useful, because a lot of people ask me about that.'' Videotaped patient interviews engaged user emotions and empathy while presenting often subtle and sophisticated points of patient treatment and experience. Interviewed users dealing with cancer tried, sometimes quite desperately, to relate what they saw in the program to their own experiences. Patient interviews provided them with an explicit and socially acceptable means of doing so. Patients and family members seemed to develop insights into their own situations based on the ®rst hand experiences of others. The addition of this essential `human touch' to computerized information provision enhanced the informational and support elements of the web site, and the end result appears to be empowered and better

informed patients and families. As one family member concluded: ``It [the program] empowers patients because there isn't the intimidation of sitting in front of a doctor who is so busy. You are in front of a computer and your time is your own. It's like having a number of experts at your ®ngertips.'' 4. Conclusion and practice implications The availability of new computer technology has resulted in substantial interest in interactive computerbased patient education, which has the potential to improve health status in several major areas of care. The present article provided a detailed description of the goals, structure, and content of an innovative computer-based education program developed for patients and families facing cancer. The PMH computer-based patient education program is aimed toward empowering those dealing with cancer by providing information, tools, and support, and is a user-driven Intranet web site supported by trained volunteers. The program was developed through an interdisciplinary collaboration of multidisciplinary health care providers and educators at PMH, patients, and software program developers. Preliminary formative evaluation suggests that the PMH patient education web site is easy-to-use, informative and enjoyable for patients and families, volunteers, and health professionals. Respondents' feedback and suggestions for content and format enhancement have been carefully summarized and used to make ongoing revisions to both the web site and the OIES. Formative evaluation is ongoing. Since the pilot study was not designed to fully evaluate the effectiveness of the program, further summative evaluation is needed to generalize the effectiveness of the program on various patient outcomes. Future research directions include both quantitative and qualitative research looking at comparisons to traditional forms of education and at the impact on various patient outcomes such as knowledge level and behavior change. References [1] Degner LF, Davison BJ, Sloan JA, Mueller B. Development of a scale to measure information needs in cancer care. J Nurs Measure 1998;6:137±53.

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