Roma Harris and Nadine Wathen
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Women living in a rural Canadian county were interviewed about how they locate health information. The experiences they described raise interesting questions about the efficacy of government sponsored e-health initiatives, particularly when such programs are intended to compensate individuals who live in remote communities for lack of access to health care services. Most of the women in the study undertake considerable health-related information gate-keeping for themselves and on behalf of family members and others in their personal networks. They seek and assess information from a wide variety of sources, some of which they locate via the Internet, and they balance what they learn against their experiences with the formal health system. The women’s accounts focused repeatedly on the quality of their relationship with those to whom they turn for assistance, although the actual roles of helpers, whether physicians, friends, librarians, or staff in health food stores, often appeared to be incidental. Instead, helpers’ perceived effectiveness seemed to depend largely on how well they express care when information is exchanged. Several women also reported that they had diagnosed and even treated themselves, sometimes on the basis of information gathered from the Internet. These and other findings are discussed with respect to public policy concerning consumer health information and the potential role of public libraries in the provision of health information programming in rural communities.
A report on the health of women living in Canada’s rural, remote, and northern communities suggests that there is an inverse relationship between the size of a community and its health status.1 Rural residents have shorter life expectancies, higher rates of disability, and experience more accidents, poisoning, and incidents of violence than their urban counterparts. Many rural dwellers also face challenges in access to health care, including lack of privacy, limited local services, and inadequate transportation systems. These problems are not unique to Canadians; rural women living in Australia are reported to experience “higher morbidity and premature mortality rates than urban women for a number of conditions … have reduced access to health and illness-management services, [and] live in more hazardous environments.”2 Similar issues face women living in rural areas of the United States. According to the Rural Assistance Center, a rural health and human services information portal, relative to their urban counterparts, women living in rural areas face higher rates of chronic diseases, including heart disease and cancer; are at greater risk of death from diabetes; and encounter more significant barriers to healthcare access as a result of poverty, lack of insurance or being underinsured, lack of public transit, geographic isolation, and limited access to healthcare providers.3
These findings raise important questions about current approaches to government health policy with respect to consumer health information, particularly as they affect women who live in rural areas. In Canada and the United Kingdom, e-health policy initiatives, such as publicly supported Web portals to provide consumer health information, have been developed so that governments can meet their obligation to provide citizens with equitable access to health services. Such approaches are built on the idea that “greater availability of health information via the Internet will lead to the emergence of more informed patients who are better able to assess the risks and benefits of different treatments for themselves.”4 For instance, Canada’s consumer health portal, the Canadian Health Network, declares that its mission is to “support Canadians in making informed choices about their health, by providing access to multiple sources of credible and practical e-health information.”5 This, and other, similar efforts, to support and encourage Internet use for locating health information often appear to be founded on untested assumptions about the potential health benefits of such interventions. For example, researchers who described a United States-based study in which chronically ill women from rural areas were taught to develop their computing and Web search skills hoped that by teaching the women to locate “quality” information, they would be better able to manage and adapt to their illnesses. While the intervention was successful in increasing the women’s computing skills and appeared to have a positive effect on their self-esteem and sense of social support, the anticipated health benefits were not found. For example, there were no significant changes in the women’s levels of depression or stress.6
As a public health strategy, the idea of empowerment through information, particularly when it is dependent on Internet-based services or telephone nurse-advisory programs, also is problematic for people on the wrong side of the digital divide or for those who need more face-to-face or hands-on comfort than these services afford.7 Indeed, it sometimes appears that e-health or cyberhealth information initiatives have evolved with little awareness of how people, particularly women, actually seek and use information. Meadows, Thurston, and Berenson argue, for instance, that “as programs continue to be developed and as policy decisions are made regarding health promotion planning and resource allocation, it is important to take into consideration information that reflects the experience of women for whom they are intended.”8 Similarly, Warner and Procaccino wonder “whether the information seeking process of female health seekers is being considered in attempts to connect them with quality health information.”9 An editorial in the British Medical Journal calls for “e-health developers” to “first evaluate users’ needs,” noting that “few rigorous studies exist that show benefit from e-health.”10 In fact, critics of e-government programs, whether targeted at health, welfare, or other sectors, argue that achieving universal access through online services is problematic not only on the supply side, because sites and services have not developed in ways that are “sufficiently interesting and appropriate for users,” but also on the demand side, because people “may not have the skills to use the technologies; may not trust online services; may not see the benefit of online services; and, what is more, they may not even be interested in them.”11
Some would argue that public libraries have or should have a role in facilitating public access to health information because of their potential to help users overcome some of the problems associated with e-health strategies.12 Unfortunately, despite the excellent efforts of the Consumer and Patient Health Information Section of the Medical Library Association (CAPHIS) and the National Library of Medicine (NLM), libraries and librarians are seldom visible on the health policy radar, at least not in Canada. And, although there are many good examples, especially in the United States, of well-developed services in which public libraries partner with other organizations to address consumer health needs, including outreach services directed at rural citizens (see, for instance, Ohio’s Netwellness Program), there is considerable variability from community to community in the quality and availability of such services.13 An NLM pilot study to evaluate public library consumer health services suggested that even though librarians regard health information as a top-ten topic of interest for patrons, not all public libraries have specific health information centers, and some librarians feel inadequately prepared to respond to health information requests.14 In Canada, a study of public libraries’ responses to inquiries during the Sudden Acute Respiratory Syndrome (SARS) outbreak in Toronto revealed tremendous variability in the quality of service, clearly demonstrating that a robust and focused consumer health information (CHI) role has not yet been embraced by many public libraries.15
For libraries that intend to support public access to health information, a clear expectation in most discussions of best practices is that CHI services will, in some way, involve the Internet. And, whether the service involves using Web resources to provide reference support to patrons in search of health-related information, educating patrons about Internet search strategies, providing pathways to good health information Web sites, or teaching searchers to evaluate sites using evaluative criteria to assess site quality, success depends on understanding users’ health information needs and practices. As a starting point for this understanding, it is useful to review what is known about how people generally seek information to cope with everyday problems.
Drawing from various research literatures, Harris and Dewdney described a number of principles of information seeking, the most important of which is that information needs arise from the situations in which help-seekers find themselves.16 In other words, any need for help or information is situation-based and dependent on a particular context. For example, given what is known about the health challenges facing people who live in rural areas, it seems likely that rurality provides a significant context for health-information seekers, especially women.
It also is widely accepted that people often rely (perhaps too heavily) on information that is readily accessible, sometimes referred to as the principle of least effort. How accessibility of information is determined in the rural context has not been specifically explored, nor has the degree to which accessibility trumps conventional medical authority when people are looking for answers to health-related queries. For example, in what circumstances will people living in a rural or remote area rely on and make health-related decisions on the basis of materials that are easily at hand, or take advice from individuals who happen to live nearby, rather than seeking out or traveling to consult a more authoritative source, such as a physician?
Another common search principle is that people tend to rely on advice and information from others, especially those similar to themselves, and resort to institutional sources only when earlier search attempts are seen to be of limited use. In addition, most of us expect, regardless of whom or where we consult, whether through informal networks or institutions and formal systems, that help and information will be provided in a supportive and nonjudgmental manner. In fact, for many people, the emotional experience associated with receiving information can be nearly as important as the quality of the information itself.
Information is not only acquired through deliberate acts of searching, but also through the passive monitoring of everyday life, through which people learn about and stay oriented in their environments.17 Incidental information is acquired, for example, through everyday conversation, and by such means individuals become aware of pathways that might be followed in the event of need.18 As a result, people’s social networks are likely to have an important influence on the information to which they have access, and key individuals within these networks may facilitate or constrain information exchange.19 As Williamson explained, “while it is very important to focus on users in any study of information for everyday life, it is also important to study them in relation to the major systems of information provision in society. It is the latter which inform people when they are sometimes unaware that they need information.”20
Understanding health information needs, then, requires some knowledge of the formal and the informal networks that exist in a person’s community as well as the connections between that individual and these networks. In rural or remote communities, it would be valuable to know how peers and lay experts, as well as institutional and organizational supports outside the traditional medical system, such as libraries and librarians, are consulted in the absence of easy access to formal healthcare providers. To explore these issues in the present investigation, we studied the health information-seeking experiences of women who live in a rural area of Canada. Our goals were to: (1) learn more about how rural women go about searching for and using health information; (2) identify barriers they may have encountered; and (3) consider the implications of their experiences in terms of the principles of information-seeking, in the context of government e-health policies, and with respect to the potential for library services to improve access to health information for rural residents.
Method
Using ads in local newspapers, advertising flyers, and through word of mouth, women were recruited to participate in a study about their health information-seeking experiences. The forty women who took part had lived for at least two years in a large, sparsely populated, highly agricultural rural county in southwestern Ontario. The population of the county is 55,000 (17.5 people per square kilometer), and its largest community has a population of 7,500, although from anywhere in the county it is only approximately 200 to 250 kilometers, or 120 to 150 miles, to Canada’s largest city.
An experienced interviewer conducted the interviews, all of which were tape recorded. At the outset of the interview, twenty of the participants were asked what they would do if they or a family member woke during the night feeling ill, not with life-or-death symptoms, but with something more serious than the flu. The other twenty women were asked what they would do about a nagging, nonurgent health concern. All participants also were asked to describe an experience in which they had actually sought information about a health concern for themselves or a family member. They were asked about other sources of health information they had consulted in the past and to provide some personal demographic information. Each woman was given a twenty-dollar honorarium to thank her for her time.