Gatekeeping in its various forms is seen as a key differentiating feature of the Internet: collective gatekeeping (e.g., bulletin boards, wiki), individual gatekeeping (e.g., blog, social networking sites), and unknown gatekeeping (e.g., Internet).62 The possibilities for gatekeeping proliferate every day. Although it is well known that individuals often consult a variety of others before presenting themselves in clinical settings,63 outside of HMO and organizational contexts, there have been few systematic attempts to shape the nature of these prior consultations. If these prior information searches happen in a relatively uncontrolled, random, parallel manner (conditions b, d, and f in figure 1.1), expectations (e.g., treatment options, diagnosis, drug regimens) may be established that will be unfulfilled in the clinical encounter.
There are a number of ways that these third parties, particularly knowledge brokers, can complement clinical practice. First, individuals who want to be fully prepared before they visit the doctor often consult the Internet.64 In fact, Lowrey and Anderson suggest that prior information use may impact respondents’ perception of physicians.65 Second, there appears to be an interesting split among Internet users, with as many as 60 percent of users reporting that while they look for information, they only rely on it if their doctors tell them to.66 While the Internet makes a wealth of information available for particular purposes, it is often difficult for the novitiate to weigh the credibility of the information, a critical service that a knowledge broker, such as a clinical professional or consumer health librarian, can provide. This suggests that a precursor to a better patient-doctor dialogue would be to increase the public’s knowledge base and to provide alternative but complementary information sources, by shaping clients’ information fields. Flay and his colleagues have found that to induce behavioral change regarding health promotion, a message must be repeated over a long period via multiple sources.67–68
By shaping and influencing the external sources a patient will consult both before and after visits (path c) clinical practices can at the same time reduce their own burden for explaining (or defending) their approach and increase the likelihood of patient compliance. Thus working within an interprofessional team, with reciprocal relationships in the collaborative paths in figure 1.1, with complementary information systems, would seem to offer some real benefits in this emerging information environment.
While there has been much concern over patient/client use of the Internet in their search for information given the often problematic quality of the information they find, until recently there have not been proactive efforts to guide their searches. There would seem to be a substantial advantage for health information services to operate in concert with physicians in this endeavor.69 They could in effect arrange their services to provide more detailed information for those who would like it and to ensure that the information services that patients use are of high quality.
These concerns have been most recently expressed in systematic attempts to provide information prescriptions to patients as a regular part of their care, an attempt, in effect, to get paths a, c, and e all operating jointly. Just as patients get prescriptions for drugs, they would get written prescriptions for websites to consult related to their medical problems. This concept has been embraced by the National Library of Medicine in their MedlinePlus website. They have partnered with the American College of Physicians Foundation to assist physicians in this endeavor, developing an Information Rx Toolkit to assist clinicians in developing appropriate materials.
Research trials of this ACE idea have found that it increases use of authoritative sites such as MedlinePlus and that patients were more likely to find this information valuable if their physician prescribed it. The physicians involved in these trials found that there was greater patient compliance, reduced office time spent on education, and that they helped to explain difficult concepts.70
Physician’s Unique Role
The most important gatekeeper in our traditional health-care system has been the physician. Increasingly the physician’s most important role rests on his or her judgment and guidance on how a client should navigate an increasingly complicated health-care system where “the tacit boundary previous researchers have drawn around the patient-provider relationships seems outdated.”71 Physicians can provide critical guidance as to what specialist to turn to, and based on their prior experience, they can also offer critical advice on what the insurance company will cover and what institution will provide the best care.
The role of physicians in the emerging world of personalized medicine, and ready access to a variety of information sources, is constantly changing. Their role in imparting increasingly complex information is an important policy issue, especially since their time with patients is increasingly limited.72 Their informatics skills, especially concerning the most trustworthy and accessible source, can provide critical guidance to patients. However, it is an unlikely role for physicians to adopt in part because their lack of training in the skills involved. But, as Slack long ago observed, any doctor who can be replaced by a computer deserves to be.73 Ultimately, they could become more of an interpreter, an evaluator of information that a patient has acquired, serving as the ultimate arbiter of what actions patients should take as a result of their information seeking,74 in this way fully realizing the collaborative roles specified in figure 1.1.
One thing that distinguishes our contemporary information age is a movement away from a focus on individual action to collaboration.75 It would be nice if this information was from a trusted medical provider working in the context of an inter-professional team responsible for patient care, but the medical system often gives little thought, and more to the point perhaps, has little control over where people will go. Interest in collaborative information seeking where both parties seek information has grown, in part because the parties often have different perspectives and skills in pursuit of common information seeking goals.76 Partly because of the decreasing time spent per patient in HMOs, physicians pursue only about 30 percent of the questions that arise during their practice.77
Because of the doctor’s role as the key decision maker in hospitals, the benefits of advances in information technology have been slower to come in the health arena than in more commercial sectors of our society, lagging from seven to ten years behind other industries.78 Physicians find information technology threatening on several levels: it removes their exclusive control over information; it increases the possibility that their behavior will be monitored (e.g., through assessment of medical records of their patients); and many physicians are loath to admit ignorance in any area, a key problem when they need to learn new technologies.79 So, it is not only the patient who needs help in seeking information.
Countervailing pressures to drive down costs from insurers and government agencies are overcoming the traditional resistance of health professionals to information technologies.80–81 The National Institutes of Health (NIH), for example, see significant synergies between health information technology and health communication, touting information technology’s capacity to improve provider-patient interactions, improve self-maintenance of chronic diseases, enhance health promotion, enable more productive interactions among differing health professionals, and facilitate efficient information seeking.82 These trends are only going to increase in the era of e-health and m-health and the exciting possibilities offered by remote sensing. These developments are going to be increasingly important in the management of chronic diseases and co-morbidities as baby-boomers continue their relentless march.
The effective use of information rests in part on the extent to which they truly are collaborative relationships. While physicians and informaticians interpret information for clients, clients are often immersed in more uncertainty than in the other roles that tend to absorb uncertainty for them. Understanding human information behavior becomes more critical to health outcomes and, ultimately, patient satisfaction depends on the collaborative informatics skills revealed in the relationships. When patients are actively involved in their own information seeking and they have a commensurate level of self-efficacy, they are more likely to comply with any information they uncover with the outcomes of information searches in effect becoming teachable moments.83
In answer to the question posed in the title of this chapter, health information seeking has changed, for the most part for the better, but there are still significant problems and issues. It is at times dangerous to rely on our perceptions of what should be done. Information seeking research suggests that rational, persistent approaches to channel selection are seldom used by individuals when they actually seek health information.84 Are physicians keeping up with their changing roles? Are institutions meeting the challenge? Is everyone being overwhelmed? Health information seeking is a moving target; there is also a possibility for retrogression—people’s level of ignorance has not really changed in spite of technological growth and increased access.85 With the amount one needs to know increasing with every passing day, the gap between what individuals need to know and what they do know in relative terms actually may be growing.
As we have seen, the federal government has made considerable investments in health information technology, providing the national information structure that has supported the work of health information professionals. Like our basic physical infrastructure, there is a very real possibility that these investments will not continue. With fiscal cliffs and ever-expanding budget deficits there is even a very real possibility of considerable disinvestments in our health information infrastructure. A large part of the government’s initial investment rested on the assumption that it would result in considerable cost savings in the delivery of health care. This has been realized for the outliers, cyberchondriacs who have been substantial users, and who might serve as very useful lobbyists for maintaining and enhancing our existing infrastructure if they are cultivated as true collaborators. However, little evidence supports that this infrastructure has improved the health literacy of the public at large. Health care reform and various changes in health funding, if we are not vigilant, may actually return us to a top-down system in which at least choices of treatment options are heavily constrained.
References
1. Jansen, B. J., and S. Y. Rieh. “The Seventeen Theoretical Constructs of Information Searching and Information Retrieval.” Journal of the American Society for Information Science and Technology 61, no. 8 (2010): 1517–34. doi:10.1002/asi.21358.
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