“I’m Not Sure If That’s What Their Job Is” Consumer Health Information and Emerging “Healthwork” Roles in the Public Library

Roma Harris, Flis Henwood, Audrey Marshall, and Samantha Burdett

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Members of the public are expected to assume increasing responsibility for their own health and to keep themselves informed about health issues. Here we describe a study of library users’ and staff members’ expectations about the public library’s role in supporting citizens’ “healthwork.” We conducted our research in a public library in the United Kingdom that operates on a model of patron self-service. Data were gathered through in-depth interviews with library patrons and staff members as well as a written survey of patrons who had visited the library because of a health concern. Our findings suggest that the library’s users regard the public library as a highly trusted source of health information. The majority of surveyed users were in search of books relevant to their health concern, and more than half were able to locate what they needed on their own. While generally self-sufficient, some of the survey respondents as well as those who took part in the interviews indicated that they had consulted library staff for help, although they appeared uncertain about the level of reference support they should expect. Members of the library’s reference desk staff who took part in the interviews expressed frustration over policies that limit the time available to support patron’s inquiries, and many lacked training, particularly in online health information resources. The results raise important questions about the emerging “geography of responsibilities” in health-informing work arising from changing information technology and new emphases in health policy.

Purpose of the Study

As governments and private sector organizations look to control health-related costs, citizens face growing pressure to take responsibility for their own health. An important element of this responsibility involves staying informed about health matters, one of the tasks described by Mykhalovskiy, McCoy, and Bresalier as “healthwork,” which they describe as “the broad terrain of everyday/everynight activities through which people look after their health.”1 In a recent book, Wyatt, Harris, and Wathen discuss the complex and shifting “middle ground” of health information work and introduce the term health “info(r) mediary” to describe “the various configurations of people and technologies that perform the mediating work involved in enabling health information seekers to locate, retrieve, understand, cope with and use the information for which they are looking.”2

The purpose of the research presented here is to explore this middle ground in the context of a public library—specifically, the roles and expectations of patrons and staff with respect to the library’s role in enabling citizens’ health information work.

The Obligation to Be Health-Informed

Irvine explains what is expected of people in the current health care climate:

As health consumers, people are meant to develop new relations with health care providers, policy makers and themselves. At the level of practical conduct they are admonished not to act unthinkingly and not to defer to the sovereign will of health care providers. Rather they are encouraged to seek out information, for example, finding out the side-effects of prescribed medicine, consult books for guidance on how to cope with illness, and investigate and evaluate the available medical services.3

There is considerable evidence that many members of the lay public comply with this expectation and are active health information seekers, often relying on the Internet to locate information for themselves and on behalf of others. Reports from the United States, for example, suggest that 80 percent of “connected” citizens have searched online for information about health topics.4 In Canada, a random telephone survey of rural residents indicated that of the nearly 75 percent who had looked for health information in the previous year, 60 percent had searched online.5 Despite its power and convenience, however, the Internet is not a panacea that can entirely satisfy the public’s need for health information. Not only do most Internet information seekers use less-than-optimal search strategies that may produce “misleading or unrelated information,”6 but lay searchers often have difficulty judging the reliability of the health information they retrieve, and few actually check sources or dates of the information they find online.7 Health-related information, even that which is specifically intended for lay use, may not meet “the quality criteria required for unbiased evidence-based patient information.”8 Moreover, the volume, complexity, and potentially distressing nature of health and medical information encountered online may lead searchers to look elsewhere for help and emotional support.9 Numerous studies have shown that lay researchers often have difficulty retrieving relevant items.10 In fact, it could be argued that health information seeking, technology has actually added to the workload of ordinary citizens.11 As Oudshoorn explains, “The introduction of new technologies often leads to redistribution rather than a reduction of work,” and she argues that in the case of online emerging medical technologies that require active self-monitoring by patients create a new “geography of responsibilities” that produce new obligations and “competences for healthcare professionals and patients.”12

Although Oudshoorn’s remarks are directed at the work of patients and health care providers, they could equally apply to new health-related work roles and obligations that are (or could be) fulfilled by public reference library staff and library users. Not only are public libraries well positioned to address the digital divide by providing physical and intellectual access to online health resources, but they “represent a promising, yet relatively untested, source of assistance for helping people find and use desired health information, and for making referrals to local health services/programs.”13 As Gillaspy points out, although public librarians “can never diagnose or prescribe or recommend one course of treatment over another, they can provide the expertise in health information resources that will direct consumers to trusted sources that will aid them to work with their health care providers in making decisions about their care.”14

Public Libraries Roles in Providing Health Information

Public libraries that support lay users’ healthwork can be found in several countries. In the Netherlands, for example, some public libraries have consolidated health-related resources in “health information points” and also provide access to specially trained reference librarians who are available to assist patrons with their health inquiries.15 Similar initiatives exist elsewhere but, unfortunately, in most countries the national, regional, and local policies that direct the design and delivery of health care and public library systems are often silent, inconsistent, or unclear about the public library’s role with respect to public health. This is evident, for example, in Canada where (1) consumer health information is not explicitly identified as a priority in the planning documents of regional organizations that give direction to public library service, and (2) public libraries are not identified as important sources of health information in government health policy directives. In the United Kingdom, where policy documents produced by the Department of Health and the Museums, Libraries and Archives Council suggest that public libraries “have an opportunity to interpret the role they can play as information providers in helping provide ‘informed choice for all’ about health, mental health, healthy lifestyles, healthy eating, exercise and all public health priorities,”16 other significant policy documents, such as a national report on the state of UK public libraries, make no reference at all to the provision of health information among many recommendations for improvements to the public library service.17

In the United States, a pilot project to evaluate the role of the public library in providing consumer health information conducted on behalf of the National Library of Medicine (NLM) revealed that, even though health was recognized to be among the top topics of interest for public library patrons, “few of the participating libraries had health information centers” and “many librarians were not yet comfortable providing reference assistance to patrons in part because of concerns about providing misinformation and possibly intruding on patron privacy.”18 Although the NLM project was undertaken more than a decade ago, today there are few U.S. public library mission statements that refer specifically to health as a responsibility even though, in practice, many public libraries do play a role in providing consumer health support. For instance, a survey of North Carolina public libraries revealed not only that all of the participating libraries provide health-related reference services and that nearly all made health information resources available, but also that more than 80 percent taught users how to search for information.19 Therefore, even though there are many excellent examples of individual public libraries that offer consumer health information programs in countries with well-developed public library systems, these programs are not universally available, nor is there a single standard to be met in terms of the scale or scope of these services.20 As a result, from one community to the next, there is considerable variability in the degree to which consumer health is emphasized in the resources and reference services provided in the local public library.

A commentary published in The New England Journal of Medicine raises worrisome questions about policies that emphasize personal responsibility for health, suggesting that they may lead to a reduction in access to basic health benefits for the poor and those suffering from chronic medical conditions.21 If this scenario unfolds as predicted, and as ordinary citizens face increasing pressure to be informed health “consumers” and to play a more active role in providing their own care, the public library could be an obvious go-to site for help that may not be available elsewhere.

What Do Users Expect from Public Libraries?

Given the uncertainty about the public library’s health mandate, at least at the policy level, how is the public library perceived by users and staff members to support the healthwork of ordinary people? This question has received little attention in the research literature, although a few studies have addressed the issue, at least in part. In one study, an exploration of rural women’s health information-seeking, more than half of the women interviewed said they would consider using a public library for support in dealing with a chronic health concern.22 For some of the women in that study, the public library was seen as potential source of health-related help because it provides access to the Internet, trustworthy print materials, and support and advice from library staff. Others were less confident about the library’s value and raised concerns about confidentiality and the age of public library resources. Some respondents also suggested that the Internet has replaced the function of the public library. In another study, a random telephone survey of residents from a rural region in central Canada, only 7 percent of the respondents who had looked for health information in the previous year had actually used a public library to help in their search.23 Of those, most went to the library in search of helpful books, although a few mentioned that they had been helped by members of the library staff. In another study, Borman and McKenzie analyzed public library staff members’ accounts of health-related reference interactions.24 Their results suggest that staff members see the library as providing a potential solution to the barriers people encounter in the health system, such as a lack of time on the part of health professionals to answer patients’ questions. They described the library’s role as “guiding, directing, and connecting users to outside sources” and providing “a welcoming place where staff will take the time that other information providers are not able to provide.”25

The Study

In this article we describe the results of a study conducted in a British public library in which we investigated the library’s health information role. The site of the study was of particular interest because the United Kingdom’s national health policy explicitly identifies patient “self care” as one of the “key building blocks for a patient centred health service.”26 Also, the particular library in which we conducted the research has adopted an organizational model that emphasizes patron self-service. In the Borman and McKenzie study of health reference encounters, the personal accounts of public library staff members were analyzed to identify barriers to success. In this study we also relied on the personal accounts of staff members but, in addition, we sought input from library users. As well as exploring participants’ experiences of health information-seeking in the library, we inquired about their expectations about the positioning of the library within the broader health-information landscape. We also considered how the Internet factored into library users’ search for health information and at what points in their help-seeking processes the public library and particular resources within it (including the library’s staff) became relevant, and in what ways.

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