The Impact of Web Based Cancer Information on Patient Outcomes - Article Example

The Impact of Web Based Cancer Information on Patient Outcomes Abstract The modern patient is more learned than one from the previous generation, primarily due to the tremendous development of information and communication technology. The internet is a rich source of health information which allows the modern cancer patient to be well aware of the condition before any contact with a medical professional is made. This has naturally allowed improvement in patient outcomes due to better compliance and regular maintenance of knowledge base. ICT has not only helped the patient but the physician as well, who can keep abreast of the latest developments in the course of disease and take timely decisions to influence therapy. Interactive programs and electronic databases can be assessed more readily and have proved successful in enhancing health education as well as the proper application of therapeutic strategies. Introduction Patient outcomes depend upon a confluence of factors from either end – the patient and the healthcare professional. In patients’, nature of the disease, socio-cultural background, literacy and the healthcare facilities within access play pivotal roles. At the other end, qualification, commitment and dedication exert equally strong influences on an ideal outcome. Rapid strides in the application of information and communication technology (ICT) in healthcare have revolutionized the way knowledge is accessed and distributed in present times. Easy to understand online information is available at the click of a mouse which has enlightened the previously ignorant patient. Most of the healthcare related searches on the World Wide Web are directed at: 1. Looking for information for specific diseases before actually consulting a healthcare professional. 2. Post clinical encounter substantiation and reassurance of the therapeutic interventions undertaken by the physician (McMullan, 2005). Accordingly, the patients’ information needs have to follow the continuum of a disease process right from the initial diagnosis, to the justification of the post treatment modalities (Rutten et al, 2004). The popularization of telemedicine has also ushered a change in the working of an oncologist, who now has ready access to patient information through digitalized electronic records and can interact with other specialists in the field through voice and video chatting (Ricke & Bartelink, 2000).This has revolutionized the ‘patient-healthcare professional relationship’ and physicians now know that they have to deal with a patient who is already enlightened with the knowledge of his condition. Information on Cancer There is a plethora of information available online on almost every known cancerous condition and the patients are aware about the treatment modalities available both in the modern western system of medicine as well in alternate systems of therapy. Self-help groups, blogs, renowned hospitals, pharmaceutical and disease specific organizations besides the government healthcare departments and international healthcare authorities like the WHO (World Health Organization) offer the latest information on their websites which is accessible to the patient at all times. The latest research and development (R&D) findings are continuously updated to keep the data current. Due to this information and communication explosion the patient has become more enlightened and is now fully aware of the implications of compliance with the recommended healthcare guidelines. Patient outcomes therefore stand to improve tremendously in the coming years as more progress is made in this direction. Review of Literature Studies on the impact that ICT has made on patient outcomes have been vigorously pursued in the recent past and research and analysis show that it has had a deep and permanent effect on the practice of modern medicine. The growth of evidence based practice, immaculate record keeping and vigorous follow-ups after treatment have improved the administration of healthcare protocols and yielded better results in patients. Increased use of patient interactive software has allowed the physicians to identify and know their patients in a better manner and this has resulted in ensuring better patient compliance. The overall effects have been positive in nature and the level of satisfaction has increased for both the patient as well as the healthcare professional. Examples of success of ICT Tools Example 1 In one such endeavor, in order to facilitate the decision making process in advanced stage cancer patients, a web based communication program called ‘CONNECT” was launched and the degree of its success after application has been evaluated, and the deficiencies and lacunae pointed out (Fleisher et al, 2008). Initially, the authors felt a need for such a program due to the lack of communication between terminally ill patients and their attending oncologists. This served as an obstacle in their ability to take informed vital decisions for selecting the most appropriate treatment modalities and the impact they would have on ‘quality of life’ (QOL) expectations of the patients. A program such as CONNECT was supposed to serve as a means of rapid communication and proper assessment of a patient’s requirements by the concerned oncologist, so that he could make the most appropriate therapeutic decision. The program could simultaneously impart confidence in the patient by providing appropriate information about the condition. The process of information gathering, technical data analysis and preparing summaries of individual cases could be automated and the pertinent information could be accessed whenever desired. In such a program, the patients can communicate their expectations to the oncologist after due reflective analysis. Such relationship is impossible in direct face to face interaction either due to lack of communication skills of the patient or constraints of time during the interaction. Such a program could assist in disseminating health education, social marketing, adult learning, program planning and evaluation as well, according to the authors (Fleisher et al, 2008). After designing the CONTACT program on the basis of a well known health processing model C-SHIP (Cognitive-Social Health Information Processing), the authors conducted a multi-centre randomized controlled trial to measure its success. The program depended on the ability of the patient to spend time on the internet and participate in answering well designed and specific questionnaires, as well as served to educate them by providing online interactive multimedia. Initial skills’ training was therefore essential and imparted effectively at the commencement of the trial. The authors received encouraging results and discovered lacunae in the program which they aimed at reducing during further refinements of the program. Example 2 In another study designed to assess the success of internet based interactive programs for breast cancer patients, the authors have tried to analyze programs from different locations in Europe and US. A review of literature from the various databases was conducted to measure their success rate (Ryhanen et al, 2009). 14 review articles were selected and categorized on the basis of two selection criteria: 1. The manner in which the trials had been conducted (randomized controlled trials/clinical trials/quasi experimental approach). 2. The focus population under study (considering variability factors in patients such as internet use, ethnicity, race, etc.) Although the authors cited the lack of availability of substantial literature on the topic as a major drawback, the trend portrayed in the reviewed articles suggested that there was scope for success of such internet based and interactive programs in shaping the course of patient outcomes. This allowed the dissemination of pertinent information in the shortest possible time and in the best possible manner (Ryhanen et al, 2009). Similar results were obtained from a study conducted on the effects of patient participation in an online narrative and didactic information healthcare program for breast cancer patients in the United States (Wise et al, 2007). In this study 353 American patients (one-third of them African Americans) participated in an ehealth program which resulted in substantial gain in patients’ knowledge with better outcomes, especially in the African Americans who benefitted more than the Caucasians (Wise et al, 2007). The authors recommend more use of interactive and audio-visual information for the patients. Similar beneficial results were obtained when AIDS patients participated in software based information program in Wisconsin (Gustafson et al, 1999). In the United Kingdom, a website especially designed for cancer patients, ‘CancerHelp UK’ was found to be useful and beneficial by the cancer patients who participated in a trial to evaluate its effectiveness (Tweddle et al, 2000). One essential factor was that the participants needed prior training to derive the maximum benefits. The website was chosen as the most appropriate source for cancer information by patients in relation to other sources like television and word-by-mouth sharing of knowledge (James et al, 1999). Similar benefits of internet websites were encountered in patients suffering from melanomas in a trial conducted at the University of Michigan Medical School & Comprehensive Cancer Center in the United States (Sabel et al, 2005). In the present era, a new trend of triangulation of a patient-physician-web relationship has emerged as a consumerist model (Wald et al, 2007). According to the authors, this has resulted in a complex situation in which beneficial as well as contradictory situations have emerged. As a result the dynamics of the physician-patient relationship has been altered substantially. The merits of this emerging trend have been in the shape of better informed healthcare choices, best utilization of time, emergence of a teamwork approach and development of cooperation between support groups and readily available online assistance (Wald et al, 2007). At the same time drawbacks have been encountered in the shape of misinformation due to the variability and quantity of web based information, possibilities for the exacerbation of socioeconomic health disparities and the shift in the patient-physician relationship (Wald et al, 2007). However, web based information has greatly enhanced the knowledge and readiness of the patients to undergo procedures and interventions undertaken for diagnosis as well as therapy as they acquire familiarity with the prevalent and the latest procedures themselves, which were earlier communicated only by the attending healthcare professionals. The availability of portable computers and internet connectivity has increased the user base and older patients are rapidly becoming participants in interactive health based programs. The ready availability of web based information can help in reinforcing and augmenting the directions of the physicians which provides psychological satisfaction to the patient as well removing any misconceptions which might have been framed due to inability of communicating effectively in a direct physician-patient situational relationship. Moreover patients can form self help communities and associations on the net which aid sharing of similar problems. This eliminates and dilutes the level of anxieties associated with handling the truth and inevitability of the future in terminally ill patients and enhances their QOL. Barriers in the success of ICT in Healthcare Online health information may be beneficial for the literate audiences in developed countries where the usage of English language is prevalent, but there are obstacles in its application and practice in other countries due to barriers of language, culture and literacy levels (Neuhauser & Kreps, 2008). In a study conducted on reviewing the literature available on the constraints faced due to these factors, the authors discovered that endeavors in this direction had been initiated only in the last 15 years (Neuhauser & Kreps, 2008). Such studies have highlighted the paucity of online cancer information for people belonging to non English speaking and illiterate audiences, who may be vulnerable to affliction with cancerous diseases in statistically significant numbers. Online cancer information therefore needs to be developed in line with the identification of the vulnerable groups by enhanced research, practice and framing of healthcare policies according to the multifarious identified factors. Oral and tailored communication modalities need to be developed as the patients need expert guidance for consulting the most appropriate sites on the web with regards to the information they seek (Neuhauser & Kreps, 2008). Appropriate information websites can also be developed by pertinent healthcare organizations by minimizing bias, use of evidence based communication techniques and making them patient-centered and non directive (Bastian, 2008). The vulnerable groups can belong to the hitherto underserved sections of society even within a developed country like the United States in the form of patients who have less communication opportunities, as seen in some lower income breast cancer patients (Shaw et al, 2007). In a study aimed at examining the influence of a pre-existing doctor-patient relationship in such patients on the efforts to develop an interactive cancer communication system, and the after effects on the same relationship due to the implementation of such systems, an evaluative protocol was followed by involving 231 recently diagnosed breast cancer patients. The participants were provided with requisite hardware and training, free of cost, to encourage participation (Shaw et al, 2007). The analysis revealed that a pre existing negative perception of the doctor-patient relationship among the patients was a predictive factor for the success rate of use of the new interactive system due to the conceptually distinct features it offered. The long term effect of use of the information and communication service by the patients resulted in a better perception and appraisal of the doctor-patient relationship among the patients. It was inferred that such systems are definitely effective in eliciting positive responses from the patients, who also developed better relationships with the doctors. Patients going in for radical removal of tumors and other surgical procedures for cancer at an old age are especially in need of extensive information about their condition, the pre and post operative precautions and the efforts that are needed on their part for achieving successful therapeutic outcomes. Such patients usually cannot communicate with physicians and nurses, which instills doubts and fears in their minds. The lack of proper information puts them at the risk of deficient or improper self after-care, especially after discharge from the hospital (Suhonen & Leino-Kilpi, 2006). Informational needs therefore need to be tailored and individualized according to the peculiar conditions of each patient and an effective ICT based system is the most appropriate mechanism for achieving this. The onus of responsibility for the direction of the patients towards the most appropriate web sites for individualized informational needs lies on the attending physician and other healthcare staff who are directly related in any activity which has repercussions on outcomes. This has been proven in a study conducted to determine the type, accuracy and the content of information available on the net using ‘Google’ as the search engine by specifically limiting the query to information on head and neck cancers (Riordain & McCreary, 2008). The query yielded well over 1.5 million websites out of which only 33 were found to be suitable for analysis. Only 45% of the 33 sites met the JAMA (Journal of American Medical association) benchmark of suitability for use. The physician therefore is the most appropriate person to guide the patient towards the sites satisfying strict benchmarks of accuracy of information which can actually influence outcomes (Riordain & McCreary, 2008). This particular study also identified the lack of information on QOL related information for head and neck cancer patients despite the plethora of information uploaded by various organizations on their websites. This necessitates the upgrading of such sites with the latest and the most appropriate information, in tune with the comprehensive capabilities of the patients, and also making it user friendly and easy to understand by providing multimedia based interactive information. The success of such a multimedia based information system for cancer care is illustrated in the acceptance and success of the ‘Electronic Self Report Assessment – Cancer’ (ESRA-C), a symptom and QOL screening program developed at the Washington Cancer Center in cooperation with the Seattle Cancer Care Alliance (Tariman et al, 2009). Another success story is the improvement in satisfaction levels of women and men suffering from breast and prostrate cancer respectively in a pre and post quasi-experimental evaluation of the success rate of an eight week long cancer multimedia informational intervention on health related outcomes in newly diagnosed patients from four ambulatory clinics (Loiselle et al, 2009). The study revealed improved satisfaction with the information among the patients post intervention, prevented deterioration in functional QOL and improved oncologist informational support as well (Loiselle et al, 2009). Patient trust in online information is a vital factor which decides the success of an ICT based program and appropriate evaluative procedures are necessary for ensuring the success of an informational program. A framework for understanding the trust factors has already been developed and tested for evaluating the success of a web based health program (Sillence et al, 2006). Such frameworks should be refined to yield accurate information before actually initiating an interactive healthcare program. Another vital factor in improving clinical outcomes is the enlightenment of patients about prospective cancer clinical trials which may prove beneficial only if active participation of the patient is there (Carden et al, 2007). The authors discovered a lack of such information for patients in the prominent websites. If available, the information was too technical making it beyond the comprehensive ability of a person with poor medical knowledge. Redesigning the content and presentation are vital for success of such programs. Conclusion Information systems have become an integral part of modern healthcare and the internet is the primary source from which knowledge is derived by the semi literate/literate person, either directly or with assistance from a family member or the attending healthcare professionals. Such programs therefore need to be designed with careful research and analysis at the local as well as international level to achieve positive results. The review of literature enumerates various trials with patient directed information campaigns using precisely designed software and multimedia, undertaken in different organizations. The experimental use of such software has shown significant improvements in patient satisfaction as well as clinical outcomes due to the enhanced flow of information to and fro between physician and the patient. Use of interactive multimedia based programs have already shown their mettle in improving patient outcomes in advanced countries and such measures need to be incorporated in all healthcare programs on a universal basis. The use of information technology has also simplified the maintenance of patient record which can be assessed online for consultation and opinion of the pertinent experts from different locations. Patient history and laboratory reports can also be digitized which can assist in taking vital decisions at critical junctures. Therapeutic interventions can be monitored as well as modified in a timely manner to prevent any damage due to non compliance or unavailability of the patient. ICT has therefore proven to be a facilitator of proper medical care in this era. REFERENCES Bastian, H. (2008). Health literacy and patient information: Developing the methodology for a national evidence-based health website, Patient Education and Counseling Vol.73, Pgs.551–556 Carden, C.P., Jefford, M. & Rosenthal, M.A. (2007). Information about cancer clinical trials: An analysis of Internet resources, European Journal of Cancer, Vol. 43, Pgs.1574-1580 Fleisher, L., Buzaglo, J., Collins, M. et al. (2008). 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