Libraries at University of Nebraska-Lincoln


Date of this Version



Library Philosophy and Practice 2012



Information seeking theories often refer to the concept of information needs, a presumed cognitive state wherein an individual's need state triggers the search behavior characteristic of information seeking in a given context. With the growth of electronic information and the increasing availability of health information, the idea of the 'informed patient' has become prominent. On the one hand, this has resulted in concerns about associated changes in the doctor-patient relationship and health outcomes [1]; on the other, it has given rise to visions of timely, high quality, accessible, understandable, reliable, and relevant information for patients and care-providers [2] Certainly, a kind of shift is occurring in access to knowledge and, with it, access to power [3].

Over recent years, communication and information have been considered increasingly important in helping people cope with cancer [48]. Understanding what cancer patients need to know and from whom they receive information during the course of care is essential to ensuring quality care [9, 10]. However, it is also recognised that patients vary in how much information they want and that this may change during their illness. These attitudes are reflected in the efforts that patients make to obtain further information or to resist information that is offered to them [11]. It is essential to identify the information topics that are important to patients to provide information that will increase their knowledge, promote independence and persuade them to self-manage their illness. An integral part of quality health care provision is that patients are given information that addresses their needs [12].

Salient issues include information and education, coordination of care, respect for preferences, emotional support, physical comfort, involvement of family and friends, and continuity and transitions in care [13]. Many studies of people diagnosed with life-threatening illnesses reveal that the way in which they are told information and involved in decision-making are important determinants of satisfaction with care. A large American cohort study of seriously ill patients recently confirmed that these factors were also important for families [14].

Patient information is an important part of health care. It is important to evaluate fulfillment of expectations in order to achieve this [15]. The advent of Internet-based information systems has provided an opportunity for the widespread access to medical information [16].

An integral part of quality health care provision is that patients are given information that addresses their needs [17]. Changing roles in health care call for patients to share responsibility for managing their health. Patients may need additional health-related information to participate in healthcare decisions. Providers who understand and address these needs will be in a better position to engage patients' active participation in their healthcare [18]. Patient-centered information is oriented to their needs. The main objective of such information is coping with everyday life and learning to live with the chronic disease [19]. Truth-telling in medicine is a broad area and often encompasses several ethical issues. These issues include the right of patients or their families to receive information about their diagnosis and illness [20]. Any conversation between a health professional and a patient will involve the exchange of information. No longer is the clinician the sole decider of a treatment management plan [21]. Good information provision needs to be accessible, timely, reliable and accurate. Information can help patients and care givers with a variety of different needs, from information to support decision-making (clinical information), to information to help with living with cancer (supportive information) [22].

The experiences and knowledge of patients can complement those of clinicians, health professionals, and researchers [23]. With the increased availability of health information, the idea of the informed patient has become more prominent. Concerns about the associated changes in the doctor-patient relationship and health outcomes [24], contrast with visions of timely, high quality, accessible, understandable, reliable and relevant information for patients and caregivers [25]. Certainly, a shift is occurring in access to knowledge, and with it access to power [26].

There is a considerable interest amongst gastroenterology patients concerning their diagnosis and the management of their disease. The provision of simplified letters about their outpatient management does not seem to have any advantage over simply providing copies of all relevant correspondence sent to GPs[27].

Previous research has highlighted the importance of understanding users' changing information needs [28]. No sooner have users' needs been identified and supported than they change. This paper evaluates the changing information requirements of users through their information journey in two different domains (health and academia). In-depth analysis of findings from interviews, focus groups and observations of 150 users have identified three stages to this journey: information initiation, facilitation (or gathering), and interpretation. The study shows that, although digital libraries are supporting aspects of users' information facilitation, there are still requirements for them to better support users' overall information work in context. Users are poorly supported in the initiation phase, as they recognize their information needs, especially with regard to resource awareness; in this context, interactive press-alerts are discussed. Some users (especially clinicians and patients) also require support in the interpretation of information, both satisfying themselves that the information is trustworthy and understanding what it means for a particular individual [29].

Patients with low literacy are less likely to use the Internet to acquire additional medical knowledge, whether they have access or not. Unfortunately, because these individuals are more likely to have worse health, their needs for health education are greater, especially for those with chronic illnesses [30]. This issue affects their relationship with physicians; studies have shown that patients' acceptance of diagnoses and treatment plans depends on education [31]. Hence, additional efforts are required to assist persons with lower literacy skills. With adaptive technologies supplying touchscreen input and audio output, kiosks can be made available for patients motivated to learn, independent of their literacy or education level [32, 33]. Physician offices with health information kiosks may be an alternative method for browsing health-related information, being temporally linked to clinician interactions. However, additional issues, such as cost, complexity of use, and potentiality for misinformation, then arise [34]. Still, additional research is necessary to determine the possible benefits and effects on the patient-physician relationship.

Statement of the Problem

Information is important in any activity. It is necessary for the implementation of any plan or project. The first agent of information processing is the recognition of the exact needs of information users. A survey of the information needs of patients is one of the most important tasks of information specialists and librarians.

Significance of the Study

Innovative studies identify and measure the information needs of patients and highlight priorities and preferences with regard to what information they need [35]. It is essential to identify topics that are important to patients to provide information that will improve their knowledge, promote independence, and encourage them to self-manage their illness [36].

When patients assume a greater role in acquiring knowledge, there must be a corresponding change in the physician's role as decision-maker. Surveys and observational studies are needed to elicit physicians' attitudes toward Internet health information and their corresponding patient-physician relationships. In addition, research is needed to evaluate the barriers to physicians' implementation of information technology. In Canada, researchers have administered a new survey instrument to stratify primary care physicians into different levels of information technology usage. This research tested a new instrument on 101 family physicians, and placed physicians in high, intermediate, and low information technology (IT) usage groups [37].



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