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Google or Call Mom? A Diary Study on the Health Information-Seeking Behaviour Among International Students

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This study examines international students' health information-seeking behaviors in Germany through a two-week diary study, identifying two main repertoire types and revealing frequent reliance on online and interpersonal sources, especially for serious health issues, highlighting barriers to professional healthcare access.

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The number of students studying abroad has increased considerably in recent years. International students often face barriers to accessing health information, affecting their mental and physical well-being. Using a repertoire-based approach, this study extends previous research that mainly focused on individual sources, online information, or specific contexts. By expanding the media repertoire approach to include an interpersonal dimension and analysing the combination of search modes, intermediaries, channels, and sources, the study provides a comprehensive examination of international students’ health information-seeking patterns in Germany, covering a wider range of topics. A two-week online diary study with 15 participants generated 102 search situations. Using a multilevel latent class analysis, the study is the first to examine health information repertoire types among international students, identifying Online Information Seekers and Online and Interpersonal Information Seekers. The findings reveal that online information is frequently used across a wide range of search purposes. Even for more serious health topics, participants relied more on lay information from the internet or trusted individuals than on health professionals. Among Online Information Seekers, the exclusive reliance on online sources warrants critical consideration, as it may reflect barriers to accessing health information and services. The study offers practical implications for target group–oriented health communication, considering varying sources and language preferences, including the introduction of dedicated health officers at universities.

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  • 10.1080/10810730.2015.1095822
Health Information Seeking, Source Trust, and Culture: A Comparative Analysis of Health Information Trends and Needs Between Guam and the United States
  • Mar 16, 2016
  • Journal of Health Communication
  • Lilnabeth P Somera + 3 more

The Guam population offers a unique glimpse into Americans of Pacific Island ancestry and their communication and information-seeking behaviors, experiences, and needs relevant to cancer. National surveys do not typically include the U.S. territories, so there are limited data on the health and cancer information–seeking behaviors of these populations, in which health disparities persist. To fill this information gap, we conducted a survey on health communication in Guam using a modified version of the Health Information National Trends Survey instrument supplemented with items measuring specific cultural factors and communication practices. The results of the survey (N = 511) revealed some differences in health and cancer information–seeking patterns in Guam and the mainland United States. Sociodemographic variables, including sex, age, education, income, and employment, were significantly associated with health and cancer information seeking and Internet use. Levels of trust in various information sources were differentiated in the Guam and mainland U.S. samples. Logistic regression models revealed differences in factors predicting health and cancer information seeking and Internet use. The results suggest that these health information–seeking patterns and factors should be taken into account when developing communication strategies for more effective prevention and control programs.

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  • 10.1017/s1463423613000194
Parental health information seeking and re-exploration of the ‘digital divide’
  • May 16, 2013
  • Primary Health Care Research & Development
  • Mary Malone + 2 more

To describe patterns of 'online' and 'offline' health information seeking in families with children under five years of age and living in five socially, economically and culturally disparate local authority (LA) wards in one inner-city area. Earlier work analysed data from the five LA wards merged as one data set. A 'digital divide' in health information seeking was identified between parents who actively sought information from both internet websites and from 14 other health information sources (online health information seekers), and those who acquired information from a more limited range of sources excluding the internet. Of the two groups, the online health information seekers had higher levels of computer ownership and, therefore, internet access within the home. Re-analysis of data (questionnaires n = 224; five focus groups; two interviews with service providers; two opportunistic conversations with service providers). Additional data were retrieved after the original data analysis and between 2005 and 2007. These data were from service user-led discussions (n = 30) held with parents in child health clinics, informal interviews (n = 11) with health visitors and semi-structured interviews (n = 2) with health visitors. Information was also retrieved from the Office for National Statistics data set. In the re-analysis, data were disaggregated at LA ward level in order to explore local influences on patterns of health information seeking. Multiple layers of influence upon parental health information seeking emerged and revealed a non-digital second divide, which was independent of computer ownership and home internet access. This divide was based on preference for use of certain health information sources, which might be either 'online' or 'offline'. A spatial patterning of both digital and preferential divides was identified with an association between each of these and features of the physical, social, cultural and psychosocial environment, one of which was perceived access to primary health care. Complex patterns of health information seeking relate to each of the 'divides'--digital and preferential. Patterns of health information seeking reflect differing perceptions of information availability and usefulness as experienced by parents within their local physical, social, cultural and psychosocial worlds. Access to primary care services is a key component of this local environment.

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Health information seeking and its effect on the doctor-patient digital divide
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A survey of 224 individuals using SureStart services (for young families) within an inner-London area was complemented by qualitative data from five focus groups of parents and general practitioners in the same area. Descriptive and multivariate statistics were used to identify and describe discrete geographical districts with differing patterns of health information seeking. A geographically defined group of 'information hungry'/'online' health seekers was identified. This group contrasted with those acquiring information through 'assimilation' ('offline' information seekers). Qualitative data revealed the processes underpinning these characteristics and professional attitudes towards the Internet as a source of health information.

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  • 10.2196/29802
Health Information Seeking Behaviors on Social Media During the COVID-19 Pandemic Among American Social Networking Site Users: Survey Study.
  • Jun 11, 2021
  • Journal of Medical Internet Research
  • Stephen Neely + 2 more

BackgroundIn recent years, medical journals have emphasized the increasingly critical role that social media plays in the dissemination of public health information and disease prevention guidelines. However, platforms such as Facebook and Twitter continue to pose unique challenges for clinical health care providers and public health officials alike. In order to effectively communicate during public health emergencies, such as the COVID-19 pandemic, it is increasingly critical for health care providers and public health officials to understand how patients gather health-related information on the internet and adjudicate the merits of such information.ObjectiveWith that goal in mind, we conducted a survey of 1003 US-based adults to better understand how health consumers have used social media to learn and stay informed about the COVID-19 pandemic, the extent to which they have relied on credible scientific information sources, and how they have gone about fact-checking pandemic-related information.MethodsA web-based survey was conducted with a sample that was purchased through an industry-leading market research provider. The results were reported with a 95% confidence level and a margin of error of 3. Participants included 1003 US-based adults (aged ≥18 years). Participants were selected via a stratified quota sampling approach to ensure that the sample was representative of the US population. Balanced quotas were determined (by region of the country) for gender, age, race, and ethnicity.ResultsThe results showed a heavy reliance on social media during the COVID-19 pandemic; more than three-quarters of respondents (762/1003, 76%) reported that they have relied on social media at least “a little,” and 59.2% (594/1003) of respondents indicated that they read information about COVID-19 on social media at least once per week. According to the findings, most social media users (638/1003, 63.6%) were unlikely to fact-check what they see on the internet with a health professional, despite the high levels of mistrust in the accuracy of COVID-19–related information on social media. We also found a greater likelihood of undergoing vaccination among those following more credible scientific sources on social media during the pandemic (χ216=50.790; φ=0.258; P<.001).ConclusionsThe findings suggest that health professionals will need to be both strategic and proactive when engaging with health consumers on social media if they hope to counteract the deleterious effects of misinformation and disinformation. Effective training, institutional support, and proactive collaboration can help health professionals adapt to the evolving patterns of health information seeking.

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  • Cite Count Icon 51
  • 10.2196/jmir.9.2.e18
Language Preferences on Websites and in Google Searches for Human Health and Food Information
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  • Journal of Medical Internet Research
  • Punam Mony Singh + 5 more

Background While it is known that the majority of pages on the World Wide Web are in English, little is known about the preferred language of users searching for health information online.Objectives (1) To help global and domestic publishers, for example health and food agencies, to determine the need for translation of online information from English into local languages. (2) To help these agencies determine which language(s) they should select when publishing information online in target nations and for target subpopulations within nations.Methods To estimate the percentage of Web publishers that translate their health and food websites, we measured the frequency at which domain names retrieved by Google overlap for language translations of the same health-related search term. To quantify language choice of searchers from different countries, Google provided estimates of the rate at which its search engine was queried in six languages relative to English for the terms “avian flu,” “tuberculosis,” “schizophrenia,” and “maize” (corn) from January 2004 to April 2006. The estimate was based on a 20% sample of all Google queries from 227 nations.Results We estimate that 80%-90% of health- and food-related institutions do not translate their websites into multiple languages, even when the information concerns pandemic disease such as avian influenza. Although Internet users are often well-educated, there was a strong preference for searching for health and food information in the local language, rather than English. For “avian flu,” we found that only 1% of searches in non-English-speaking nations were in English, whereas for “tuberculosis” or “schizophrenia,” about 4%-40% of searches in non-English countries employed English. A subset of searches for health information presumably originating from immigrants occurred in their native tongue, not the language of the adopted country. However, Spanish-language online searches for “avian flu,” “schizophrenia,” and “maize/corn” in the United States occurred at only <1% of the English search rate, although the US online Hispanic population constitutes 12% of the total US online population. Sub-Saharan Africa and Bangladesh searches for health information occurred in unexpected languages, perhaps reflecting the presence of aid workers and the global migration of Internet users, respectively. In Latin America, indigenous-language search terms were often used rather than Spanish.Conclusions (1) Based on the strong preference for searching the Internet for health information in the local language, indigenous language, or immigrant language of origin, global and domestic health and food agencies should continue their efforts to translate their institutional websites into more languages. (2) We have provided linguistic online search pattern data to help health and food agencies better select languages for targeted website publishing.

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  • 10.17576/jkmjc-2021-3701-24
Online Health Information Seeking Behavior of Non-Communicable Disease (NCD) Among Government Employees in Putrajaya Malaysia
  • Mar 31, 2021
  • Jurnal Komunikasi: Malaysian Journal of Communication
  • Azriey Mazlan + 3 more

Seeking health information is becoming more convenient with various health resources online. It would be beneficial to explore the perception of individuals’ health status concerning health information seeking and eHealth literacy. With government employees in Putrajaya found to be at high risk of Non-Communicable Disease (NCD), based on the high rate of obesity, it is beneficial to explore the factors associated with OHISB among this population to ensure adequate attainment and sharing of health information and self-management resources. The Comprehensive Model of Information Seeking (CMIS) is used to measure the factors that influence online health information-seeking behaviour (OHISB). Based on previous studies, the CMIS is commonly used to examine cancer patient’s information seeking on health information behaviour. However, this paper will be focusing on government employee’s behaviour in using online information as to their health reference. Previous studies have shown that information seeking has resulted in changes in the behaviour of cancer patients. It is believed that the outcome of this study will be beneficial in terms of developing strategies to encourage a healthier lifestyle among this population to prevent the occurrence of NCDs. Therefore, this paper elaborates on some of the theories used in previous studies to enrich individual and community online health information-seeking behaviour and health knowledge dissemination. The findings of this study show the direct relationships between trust in internet health and eHealth Literacy were significant towards OHISB. However, the direct relationships between direct experience, salience, unmet information needs and self-efficacy belief towards OHISB were not significant. Keywords: Comprehensive model of information seeking, online health information seeking behaviour, non-communicable diseases, ehealth literacy, government employees.

  • Abstract
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  • 10.1136/bmjopen-2021-qhrn.33
33 Searching for information on low back pain: trust and distrust of internet
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BackgroundPatient information is a key element in the management of low back pain (LBP) and has taken a new dimension in the digital era. With the development of Internet, health...

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  • 10.1002/pra2.2017.14505401125
“Not what I thought!” information seeking behaviors of international students during the application for graduate study in the USA
  • Jan 1, 2017
  • Proceedings of the Association for Information Science and Technology
  • Li‐Min Huang + 1 more

ABSTRACTA recent study revealed that international students' reading comprehension scores on the Test of English as a Foreign Language (TOEFL) equates to 12th‐grade reading comprehension level (Taylor, ). In evaluating the admission materials at selected flagship universities in the United States, Taylor (2017) found that the reading comprehension level ranges from 15th‐grade to 19th‐grade level. The readability of these materials can be challenging to international graduate students. Though a large body of literature exists about international graduate students in the United States, scant work has explored international doctoral students' information seeking behaviors and experiences while applying for doctoral study. We report the results of a study that explored the behaviors and experiences of 14 international doctoral students studying at a flagship university in the United States. Using in‐depth interviews, we found that the students used two types of resources, experiential (EXR) and authorized (AUR), and began looking for information by exploring the former. We identified three common themes of their information seeking behaviors and problems they experienced in using official websites. The findings have implications for improving the design of websites to support international students' information seeking and needs.

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  • Cite Count Icon 7
  • 10.2196/79961
Evolving Health Information–Seeking Behavior in the Context of Google AI Overviews, ChatGPT, and Alexa: Interview Study Using the Think-Aloud Protocol
  • Oct 7, 2025
  • Journal of Medical Internet Research
  • Claire Wardle + 2 more

BackgroundOnline health information seeking is undergoing a major shift with the advent of artificial intelligence (AI)–powered technologies such as voice assistants and large language models (LLMs). While existing health information–seeking behavior models have long explained how people find and evaluate health information, less is known about how users engage with these newer tools, particularly tools that provide “one” answer rather than the resources to investigate a number of different sources.ObjectiveThis study aimed to explore how people use and perceive AI- and voice-assisted technologies when searching for health information and to evaluate whether these tools are reshaping traditional patterns of health information seeking and credibility assessment.MethodsWe conducted in-depth qualitative research with 27 participants (ages 19-80 years) using a think-aloud protocol. Participants searched for health information across 3 platforms—Google, ChatGPT, and Alexa—while verbalizing their thought processes. Prompts included both a standardized hypothetical scenario and a personally relevant health query. Sessions were transcribed and analyzed using reflexive thematic analysis to identify patterns in search behavior, perceptions of trust and utility, and differences across platforms and user demographics.ResultsParticipants integrated AI tools into their broader search routines rather than using them in isolation. ChatGPT was valued for its clarity, speed, and ability to generate keywords or summarize complex topics, even by users skeptical of its accuracy. Trust and utility did not always align; participants often used ChatGPT despite concerns about sourcing and bias. Google’s AI Overviews were met with caution—participants frequently skipped them to review traditional search results. Alexa was viewed as convenient but limited, particularly for in-depth health queries. Platform choice was influenced by the seriousness of the health issue, context of use, and prior experience. One-third of participants were multilingual, and they identified challenges with voice recognition, cultural relevance, and data provenance. Overall, users exhibited sophisticated “mix-and-match” behaviors, drawing on multiple tools depending on context, urgency, and familiarity.ConclusionsThe findings suggest the need for additional research into the ways in which search behavior in the era of AI- and voice-assisted technologies is becoming more dynamic and context-driven. While the sample size is small, participants in this study selectively engaged with AI- and voice-assisted tools based on perceived usefulness, not just trustworthiness, challenging assumptions that credibility is the primary driver of technology adoption. Findings highlight the need for digital health literacy efforts that help users evaluate both the capabilities and limitations of emerging tools. Given the rapid evolution of search technologies, longitudinal studies and real-time observation methods are essential for understanding how AI continues to reshape health information seeking.

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  • 10.11591/ijphs.v12i3.22649
Health information seeking patterns among medical and non-medical university students in Egypt
  • Sep 1, 2023
  • International Journal of Public Health Science (IJPHS)
  • Hend Aly Sabry + 2 more

The researchers conducted the study to define university students’ current patterns of health information resources use, compare, and assess the resources medical and non-medical university students use when exercising health information seeking (HIS), and to assess their perceptions and behaviors regarding adoption of online tools. This is an exploratory cross- sectional study conducted among a convenience sample of 336 university students via an online survey comprised of the following: demographics, perspectives of health information seeking, and experiences and problems towards HIS. More than two thirds of the sampled students stated that they sought health information. Their most curious subject was lack of physical activity. Searching the internet and using social media were the most used ways to obtain health information. Ease of access and reliability of source were the most affecting sources while searching. Medical students prefer reliable websites in the health domain with high level of quality and credibility. While non-medical students access health information more through social media. Workshops could be organized for medical students to convey to them the proper criteria for selecting credible health websites sources. As regards non-medical students, reliable easily accessible health information sources that could be reached through social media.

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  • 10.3389/fcomm.2025.1679179
From social to informational exclusion: how othering shapes acculturation trajectories and health information access among international students
  • Nov 25, 2025
  • Frontiers in Communication
  • Janine Brill + 2 more

Introduction In recent years, Germany has experienced a steady rise in international student enrollment at its higher education institutions. While universities publicly commit to diversity, equity, and inclusion (DEI) principles, many fall short in translating these commitments into concrete practices. The lack of initiatives fostering meaningful cross-cultural engagement frequently contributes to integration challenges and experiences of othering. These experiences cause international students to face greater adjustment challenges than their local peers, often resulting in increased feelings of loneliness, depression, and isolation. Limited social interaction and othering can further create barriers in accessing health information and services. In this challenging time, however, it is particularly important to have access to health information and services that support and advise international students in coping with emotional and social difficulties. Drawing on social capital theory, this study examines the interrelationship between international students’ experiences of othering, their ties within their country of origin and Germany—reflected in their acculturation trajectories—and access to health information. Methods To examine these interrelations and the role of othering in these processes, we conducted interviews with 15 international students in Germany. Results The findings indicate that acculturation trajectories are reflected in participants’ health information repertoires, particularly regarding access to trusted individuals as health information sources. Participants undergoing integration typically reported utilizing a broader set of sources from multiple cultural contexts, whereas those experiencing separation or assimilation tended to rely on sources from only one context. Experiences of social othering—particularly within university settings—shaped the international students’ acculturation trajectories, especially among those experiencing separation. Linguistic exclusion and discriminatory behaviors by health professionals prompted many participants to avoid medical consultations and instead rely more on online sources. Discussion These findings underscore the need for cultural sensitivity training among health professionals and institutional efforts to counteract othering on campus through comprehensive integration strategies and cross-cultural engagement initiatives.

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  • Abstract
  • 10.1186/1472-6882-12-s1-p290
P04.20. Health informaton seeking, trust in information sources and use of complementary and alternative medicine
  • Jun 1, 2012
  • BMC Complementary and Alternative Medicine
  • L Rutten + 1 more

Purpose Patient engagement in health information seeking is associated with beneficial social, emotional, and health outcomes. We analyzed data from the 2008 Health Information National Trends Survey to characterize, and compare patterns of health information seeking and trust in sources of health information among persons who use complimentary and alternative (CAM) approaches to health and medicine and those who do not.

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Toward Quality Multimorbid Health Questions for Online Information Seeking in Q&amp;A Sites
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  • Ashwag Alasmari

There is an increasing population of health information consumers (HIC) with multimorbidity. Previous studies explored the online information behavior of patients in general or HIC with a specific disease; however, the online information behavior of multimorbid HIC remains poorly researched. The focus of my dissertation research is on the online information behavior of HIC with multimorbidity. Specifically, I aim to explore the online interaction and information seeking behaviors of HIC across different types of Q&A sites. In addition, my dissertation aims to investigate the distinctive features of questions quality posed in Q&A sites from multiple aspects including content, language, and affect. The findings provide implications for designing online Q&A sites to better support health information seeking for HIC with multimorbidity. Further, I aim to develop guidelines for assisting HIC in improving their question quality to meet their health information needs.

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  • 10.1093/tbm/ibz066
Trust in national health information sources in the United States: comparing predictors and levels of trust across three health domains.
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  • Translational Behavioral Medicine
  • Emily B Peterson + 3 more

Public trust in traditional sources of health information is essential for public health agencies and organizations to perform necessary public health functions. Little research has examined levels and predictors of trust in government health agencies and national health organizations. Additionally, few studies have simultaneously analyzed trust in multiple health topics. The major aim of this study was to compare levels and factors associated with trust in national health sources across three health topics: information about tobacco, electronic cigarettes, and general health. Data from two cycles of the National Cancer Institute's Health Information National Trends Survey collected in 2015 and 2017 were merged and analyzed for this study (n = 5,474). A series of weighted multivariable logistic regression models calculated odds of high trust in government health agencies and health organizations for each health topic. More respondents reported high trust in health organizations than for government health agencies across all topics. More participants reported high trust in these sources tobacco information, as compared to general health or e-cigarette information. Logistic models found that those higher in information seeking confidence were more likely to report high trust across all models. Other demographic variables were inconsistent predictors of trust across topics. This study highlights inconsistent sociodemographic predictors of trust across multiple health topics and national health sources. Researchers, practitioners, and policymakers should consider the unique context of specific health topics in health promotion campaigns, partner with existing community-based organizations, and encourage and enable health information seeking.

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  • Cite Count Icon 179
  • 10.1111/j.1369-7625.2005.00339.x
Understanding health information, communication, and information seeking of patients and consumers: a comprehensive and integrated model
  • Aug 2, 2005
  • Health Expectations
  • Daniel R Longo

There is a critical need for an updated, more comprehensive, and integrated conceptual model to help health care providers, patients, and consumers, as well as researchers using this theoretical model, to better understand health information, communication, and information seeking of patients and consumers. My colleagues and I have developed such a model, based on an ongoing research agenda and empirical data provided by pilot studies in the area of breast cancer. However, this expanded model is now developed in such a manner that based on deliberations with experts in other clinical disciplines such as arthritis and diabetes, it is likely it can at least be tested with patients diagnosed and consumers at risk for these diseases. A situation recently unfolded in my neighbourhood which vividly illustrates the need for this conceptual model. It also illustrates how the model is useful beyond the area of breast cancer information. A 51-year-old, college-educated, married, mother of seven children sat down to read a popular women's magazine for a few minutes while she waited for her physician husband to come home from work. As she scanned the magazine she came across an article about the warning signs of ovarian cancer. As she read the article, she became engrossed in its details because she recognized the signs and symptoms discussed and realized she had experienced each of them. Her pulse raced as she began to realize that what she had attributed to perhaps the aging process and a hectic lifestyle could in reality be ovarian cancer. When her husband came home they discussed the issue, and the next day she made an appointment with her personal physician. A number of tests were ordered, a large abdominal mass was found, and surgery was ordered. This woman has terminal ovarian cancer. In a span of 10 days, her life and that of her family has changed dramatically based on her reading of a journal that prompted her to seek medical care. This is not a unique experience; such scenarios likely occur with hundreds, if not thousands, of individuals around the globe. However, as a researcher who examines health information use, especially as it relates to health care decision-making, I noted many implications from this experience that can inform health communication research. First, health information is not always intentionally sought, yet it may be used and have profound consequences. This requires consideration of the existence, role, and importance of 'passive' receipt of information vs. 'active' information seeking. My neighbour casually came across important information in a magazine written for the general public. The recent professional emphasis on 'Health Information Seeking Behaviour' must take into account that some individuals, who have no intent of seeking health information, come across such information as they go about their activities of daily living. Second, the information received came from traditional print media, not the 'new media,' such as the world wide web, that are so frequently cited as playing a major role in health information. This underscores the need for a comprehensive view of health information sources that recognizes not only 'high tech' or 'new media' sources, but also those that are traditional and easily accessible. Third, in this case an educated, economically upper class woman received her health information through a medium aimed at women of all educational and socio-economic classes. Given the current emphasis in the health care professions on targeting 'at risk' populations, it is important to recognize that while personal variables such as socio-economic status play a role in information use, contextual issues, such as relaxing with a popular magazine vs. accessing a medical journal or website, are also important influences. In 2001, together with colleagues Patrick and Kruse, I published an article titled 'The natural history of the use of healthcare information by women with breast cancer: a conceptual model.'1 The objective of the paper was to fill a significant knowledge gap, as a review of the literature at that time revealed a paucity of empirical studies using a strong conceptual framework or model that could provide the vital theoretical underpinnings for studies of health information use and communication, especially in understanding patient decision-making, and provide a context in which to analyse and interpret empirical data. More is known today, because of the efforts of many groups including the journal Health Expectations2,3 and in the United States, the National Cancer Institute's 'Health Information Service,'4–6 but far more work is needed. Noting the lack of a strong conceptual model using a broad spectrum of health, we developed the model first described in that 2001 paper. The first conceptual model1 illustrated the theoretical underpinnings of our approach and provides a context in which to analyse and interpret the results. In fact the National Cancer Institute's 'Health Information Service'5 cites this model as one of three viable models of health information seeking behaviour together with those of Johnson.17 Our model depicted the interrelationships among the various personal and situational factors that comprise the patient's information environment and different phases of her use of various types of information to make decisions about her own health care. We were heavily influenced by components of the Health Belief Model (HBM),7,8 the awareness-to-adherence model of physician adoption of clinical guideline information,9 and the patient practice variation theory I published in 1993.10 In an effort to test our model first published in 1991, we collected data from a total of 121 women who had previously been diagnosed with breast cancer and consented to participate in our survey. The pilot study was approved by the University of Missouri Health Sciences Institutional Review Board. The survey was conducted with patients in the Kansas City area, Columbia and mid-Missouri, and the Newark, New Jersey, area. Following the conceptual model initially developed, there was a logical progression of answers one would expect. For example, if a woman said she was not aware of health information related to breast cancer, one would not expect her to later say that health information influenced her decisions about her personal health care. An initial data analysis indicated that the expected logical pattern was not always followed. In fact only 73 of the women surveyed followed the expected pattern, with 48 not following the pattern. In an effort to better understand this potential validity problem, we took a two-step approach. First, we conducted a focus group meeting with the staff involved in patient interviews and those who worked on model development to review and discuss the detailed notes taken during the time of the interviews. We then re-contacted a sample of these women for whom our nurse interviewer had sufficiently detailed notes regarding the women's medical situation and use of health information. What we found was that the initial model had a number of flaws. Perhaps the most notable was the explicit lack of recognition of the role that the 'passive receipt' of information played in the process. For example, like the woman in the vignette above, a number of women did not intentionally seek health information. This finding is consistent with the work of Carlsson11, who reports that 'patients actively sought information to a limited degree, but the majority of patients take an interest when cancer issues are presented in newspapers and magazines, or on radio and television. A more passive information seeking strategy was common in her study of Swedish cancer patients, especially among those with lower educational levels.11 Many women in our study also came across information while they read the newspaper, read magazines, listened to radio shows, watched television, or simply spoke with others about their cancer diagnosis and treatment. So these women initially answered that they were not aware of such information, but ultimately health information became available and was in many cases very useful. In other cases, subjects may have thought only about media as sources as health information, but did not view direct communication with their physician or nurse as a source of information. Finally, there were inconsistencies introduced by the lack of a specific time frame to recall the cancer experience; this was especially true for long-term survivors. These further investigations clarified the need for more explicit wording in the survey instrument and the related conceptual model, as well as further development of the model to take into account both active and passive receipt of health information. This is now detailed in the expanded conceptual model depicted on page 4. As a further test, we conducted yet another survey using the model's revised instrument with 14 patients; consistently the logical patterns one would expect were found in all cases. Finally, consistent with the approaches taken by Cowin12 and Ouitmet et al.,13 we convened a focus group of experts in health communications, health services research, biostatistics, and nursing who in reviewing the data along with the supporting documentation determined that the revised model has both face and internal validity. Our experience shows the necessity of further work in the development, dissemination, and testing of conceptual models that assist in the understanding of this important development in the history and evolution of the role of patients in their own care. Additionally, we also need to better understand the nature, type, source, and use of health information by healthy consumers, including those with a known risk for various diseases, given our advances in knowledge of genetics and the role of family history in disease. Thus, I propose that we include but differentiate 'patients' and 'consumers' in any such models (Fig. 1). Expanded conceptual model of health information seeking behaviors and the use of information for health care decisions. Johnson14 cites Summers et al.,15 who in reporting about the critical nature of cancer-related information seeking, describe information seeking as 'the result of a complex set of interactions among multiple variables each with different capabilities to predict information use'15 and propose the need for good theory that promotes deeper understanding of the issues involved.14 Bower and Bilbody16 write that 'models are abstract representations of complex areas' and cite the original work of Siegler and Osmond,17 who describe models as 'inventions of the human mind to place facts, events and theories in an orderly manner. As such, they help place empirical data, research evidence, and systematic reviews in a broad perspective and 'can assist in the interpretation of evidence in a policy context … which may provide a more solid bridge between evidence and the policy context.'16 However, they also add that conceptual models must be continually evaluated; consequently, the proposed revised model is presented in this paper. A number of cautions are in order to fully understand this model. The model is indeed derived from the experience and reports of patients themselves. As such, it is consistent with a 'patient-centred' view of care, and may be useful in placing research findings in a broad patient perspective. However, when applied in an individual patient clinical setting, caution must be taken consistent with Barnett et al.,18 who write that a 'patient-centred approach must involve tailoring information to individual patient requirement' as 'it is difficult to predict how much information patients feel they need.' While it is widely recognized that appropriate information can increase knowledge, reduce anxiety and distress, reduce decisional conflict, and increase adherence to various regimens,15,16,19,20 many patients do not want any health information other than that provided by their personal physician. Friis et al.21 report this is more likely in the elderly, but it may also occur with other types of patients. For example, most studies focus on outpatients and little is known about the information needs of severely ill cancer patients treated in hospital.21 Therefore, the revised model takes these situations into account as some patients/consumers may decide not to access information. While the traditional medical perspective may not recognize such a view, a 'patient-centred' model must recognize patient needs and wants even when they are contrary to what the professional may view as necessary or helpful. Despite that fact that 'being informed and seeking information are discussed as society's expectations of today's cancer patient,'21 it may be in the best interests of a given patient to not seek information, 'as a strategy to maintain hope.' This also was identified in our study by at least one participant. The next step is more vigorous testing of the proposed model in various populations and cultures. This will provide not only important data for the model's enhancement, but also help us to better understand the current status of the use of health information by both patients and consumers, and clarify some of the confusion found in the current literature. For example, some articles point to the tremendous growth in health information and especially internet-based information,22 while others report that at least in the United States, as of 2001, only one-half of adults 'place a high priority on seeking health information.'23 Finally, Tu and Hargraves24 report that 'contrary to [the] popular belief that Americans avidly seek health information – especially on the internet – a majority of Americans in 2001 sought no information about health concerns, according to a Center for Health System Change study.' Interestingly, this study found that, like the woman in the above vignette, 'instead of surfing the internet, the 38% of Americans who did obtain health information relied more often on traditional sources such as books or magazines.' However, they report that level of education was shown to explain a large difference in health seeking information. While popular opinion and the reality of health information use are not yet consistent, it is anticipated that over time this situation will change as information increases, health awareness is heightened, literacy improves, education levels rise, and the consumer movement continues to evolve and mature. More rigorous studies using a model such as the one proposed here are needed as we attempt, as health professionals, to better understand patient and consumer desires for health information, how they will change over time, and how we must modify and develop new and more appropriate types of information that patients will use and find helpful as they face an illness, or simply wish to remain proactive in maintaining health.

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