A model for understanding and affecting cancer genetics information seeking

https://doi.org/10.1016/S0740-8188(01)00094-9 Get rights and content

Abstract

Health-related topics are relevant to a diverse array of people, which makes health information seeking a rich area in which to study how people look for information and to create interventions to aid in their searches. Cancer genetics is an important health context because information acquisition can positively impact an individual's morbidity and mortality while also affecting an individual's family network. However, this new field of research has created a complex information environment that is constantly evolving. Traditional methods of providing content through mass communication campaigns cannot keep pace. What is needed is a strategy that does not rely on perishable content, but instead helps people gain lifelong skills to find and assess cancer genetic information on their own. This article reviews the tenets of cancer information seeking—highlighting the growing public interest in genetics—and discusses how the burden of seeking health information has shifted to the patient. The authors introduce GENIS2 (Genetic Information-Seeking Skills), which is an intervention framework for helping people build cancer genetic information-seeking skills that will be useful throughout their lives. GENIS2 is based on the Comprehensive Model of Information Seeking (CMIS), which explores people's information-seeking actions by looking at the role played by demographics, experience, salience, and beliefs, as well as the information fields in which people exist. The CMIS is outlined and its stages are used to elucidate what kinds of cancer genetic information people are looking for in different situational contexts. The CMIS is also used as the framework for creating intervention strategies that information professionals can use to help coach people toward being more self-efficacious information seekers.

Introduction

The concept of everyday life information seeking (ELIS), as outlined by Savolainen (1995), suggests the type of information seeking that individuals engage in to solve problems or orient themselves in daily life, and which are not necessarily directly related to their occupational information tasks. A promising area for elucidating this process is studying how people approach information seeking for health-related problems. Health issues are nontrivial and have a wide variety of situational dimensions, ranging from learning preventive actions to confronting a chronic health episode. Thus, an important role of health information seeking is that it allows individuals to cognitively and behaviorally attempt to gain control over health-related events (Lenz, 1984). In the context of cancer, an ever-increasing number of cancer-fighting measures means that individuals must empower themselves with information that is most relevant to them (Johnson, 1997a). People confronting cancer are facing new information-seeking challenges because of the rapid advances in genetic mapping and genetic testing, which are anticipated to continually accelerate in the near future. This implies that an enduring intervention strategy is needed to help people find authoritative information now and in the future.

This article explores how people look for cancer-related information and how the explosion in information related to cancer genetics will impact their everyday information-seeking behavior. GENIS2 (Genetic Information-Seeking Skills) is a cancer genetics information-seeking intervention approach. This approach is built upon the Comprehensive Model of Information Seeking (CMIS). GENIS2 is being developed to increase the effective delivery of authoritative and timely information to people in different situational contexts that reflect their proximity to cancer. The GENIS2 focus on information seeking contrasts directly with most health information campaigns that view the world as rational and known, and which concentrate on controlling individuals to seek values of efficiency and effectiveness (e.g., Rice & Atkin, 1989). Instead, GENIS2 addresses issues similar to Savolainen's (1995) notions of way of life and mastery of life by focusing on the process of information seeking rather than just on the results of the search.

Section snippets

ELIS

To capture the nuances of ELIS behavior, one can look at a person's way of life (Savolainen, 1995), which refers to a person's everyday activities and the value the individual assigns to each of these activities. Based on these values, people decide the order that these activities will be addressed in terms of information gathering. However, an individual's values can change over time. In the case of health issues, these values are likely to be dictated by the proximity of the health problem;

Cancer genetics as an ELIS activity

Cancer genetics information is of vital importance for the management of the disease. According to Klausner (1996), “We have learned that cancer is, at its core, the consequence of alterations in DNA—that cancer is a genetic disease. Genetic information has the potential to transform how we prevent, detect, and treat cancer” (p. 36). The U.S. public is also increasingly interested in issues surrounding genetics and genetic testing, and individuals are aware these advances may affect their

The consumer movement in health information

The literature suggests that there are potentially high levels of interest in obtaining personal genetic information (Lerman et al., 1999), but not enough human resources for personalized mediated searches (Condit, 1999). Increasingly, the responsibility for health-related matters is passed to the individual, with patients taking more active roles in decisions affecting health care, with concomitant improvements in the attitude and mental state of patients Harris, 1998, Johnson, 1997b, Muha &

The focus of GENIS2

GENIS2 addresses the information-seeking paradox seen in earlier studies, which indicate people are less likely to look for information as their proximity to cancer increases (Degner & Sloan, 1992). This appears irrational because it is likely to be the time when information could be most beneficial and result in reduced morbidity and mortality Cassileth et al., 1980, Johnson, 1997a. The GENIS2 framework addresses this paradox by perceiving a health problem as an “unwelcome guest.” It is

The CMIS

This brief review of the CMIS also points out how GENIS2 is modified for cancer genetics information. Research on the CMIS suggests it provides the “bare bones” of a causal structure, although the nature of the specific relationships contained in the model appears to be context dependent. The CMIS focuses on the antecedents that explain why people become information seekers, the information carriers that shape the intention to seek information, and the information-seeking actions that determine

The stages of GENIS2

GENIS2 adopts the CMIS concept of stages by conceiving cancer genetic information seekers as in one of four stages of “involvement” with cancer threat. The stages are summarized in Table 1. A stage describes a person's proximity to the disease. Stages also incorporate the two dimensions of information in ELIS—orienting and practical (Savolainen, 1995). At each stage, people are faced with different information needs and with different levels of emotion that impact their information seeking. In

Framework for GENIS2 information-seeking interventions

Cancer-related information seeking is often a great challenge to individuals. People need to believe that their individual actions can make a difference and that information seeking can help them gain mastery over their problems. Also, individuals have to overcome limitations of education and prior experience: they have to possess skills as information seekers, a knowledge of databases, familiarity with the Internet, weigh conflicting sources of information, and make judgments about their

Conclusion

The central assumption underlying GENIS2 is that information seeking is a key moderator between perceived threats of disease—including genetic predisposition—and the likelihood of taking action (e.g., generalized information seeking, or genetic counseling or testing). The scope and nature of the information on which to base medical judgments, the repertoire of alternative courses of action known to the searcher, and ultimately, the action taken are affected by individuals' information-seeking

References (64)

  • M.H. Becker et al.

    Health promotion, disease prevention, and program retention

  • R.L. Bishop

    Anxiety and readership of health information

    Journalism Quarterly

    (1974)
  • L.G. Bluman et al.

    Attitudes, knowledge, and risk perceptions of women with breast and/or ovarian cancer considering testing for BRCA1 and BRCA2

    Journal of Clinical Oncology

    (1999)
  • K. Bosompora et al.

    Likelihood of undergoing genetic testing for cancer risk: A population-based study

    Preventive Medicine

    (2000)
  • M.W. Calnan et al.

    The Health Belief Model and compliance with education given at a class in breast self-examination

    Journal of Health and Social Behavior

    (1984)
  • D.O. Case

    Looking for information: A survey on information needs, seeking, and behavior

    (2002)
  • C.M. Condit

    The meanings of the gene

    (1999)
  • S.H. Croog et al.

    Quality of life and health care interventions

  • P.C. Cullen et al.

    Knowledge seeking strategies of natural resources professionals

    (2001)
  • K.M. Cummings et al.

    Bringing the models together: An empirical approach to combining variables used to explain health actions

    Journal of Behavioral Medicine

    (1980)
  • A.J. DeVito et al.

    Actual and intended health-related information seeking and health locus of control

    Journal of Personality Assessment

    (1982)
  • K.A. Donovan et al.

    Knowledge about genetic risk for breast cancer and perceptions of genetic testing in a sociodemographically diverse sample

    Journal of Behavioral Medicine

    (2000)
  • V.S. Freimuth

    The chronically uninformed: Closing the knowledge gap in health

  • V.S. Freimuth et al.

    Searching for health information: The Cancer Information Service model

    (1989)
  • T.J. Froehlich

    Relevance reconsidered—towards an agenda for the 21st century: Introduction to special topic issues on relevance research

    Journal for the American Society for Information Science

    (1994)
  • C.C. Gould et al.

    Information needs in the sciences: An assessment

    (1991)
  • L.W. Green et al.

    The research literature on why women delay in seeking medical care for breast symptoms

    Health Education Monographs

    (1974)
  • K.A. Harris

    The informational needs of patients with cancer and their families

    Cancer Practice

    (1998)
  • M. Hietala et al.

    Attitudes toward genetic testing among the general population and relatives of patients with a severe genetic disease: A survey from Finland

    American Journal of Human Genetics

    (1995)
  • D. Hill et al.

    Factors predisposing women to take precautions against breast and cervix cancer

    Journal of Applied Social Psychology

    (1985)
  • Johnson, J.D. (1993). Tests of a comprehensive model of cancer-related information seeking. Paper presented at the...
  • J.D. Johnson

    Cancer-related information seeking

    (1997)
  • Cited by (70)

    • Informed public against false rumor in the social media era: Focusing on social media dependency

      2018, Telematics and Informatics
      Citation Excerpt :

      The item was measured using a 5-point Likert-type scale (1 = do not trust the government at all, 5 = strongly trust the government). Lastly, feelings toward MERS were measured using four elements: uncertainty, fear, anxiety, and feeling terrified and also were measured on a 5-point scale (1 = do not feel at all, 5 = strongly feel), based on the consideration that different levels of feelings affect information seeking (Johnson et al., 2002). Table 1 shows the demographic profiles of the respondents in the current study.

    • A multimodal critical discourse analysis of anti-vaccination information on Facebook

      2017, Library and Information Science Research
      Citation Excerpt :

      In the contexts of medicine and psychology, sentimentality is characterized by “untested” emotional sensitivity and attitudes (Gergov & Stoyanova, 2013, p. 358; see also, Hamilton, 2008). The impacts of emotional information environments on information seeking behavior have been well examined (Bronstein, 2017; Caron, Griffith, & Arcand, 2005; Dervin, 2005; Johnson, 1997; Johnson, Andrews, & Allard, 2001; McKenzie, 2003b; Zhang, 2016; Zhang & Yang, 2015). Nahl (2007) points out that amid the “emotional intensification of the information environment … emotion, feeling, value, and identity are virtual gatekeepers that condition what people are willing to notice or ignore, to accept or to oppose, to engage or avoid” (p. xx).

    View all citing articles on Scopus
    View full text