Creating a Framework for Online Cancer Services Research to Facilitate Timely and Interdisciplinary Applications

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Abstract

Researchers from a wide array of disciplines have conducted engaging and informative studies in recent years concerning the use of the Internet for cancer-related services. Typically, these publications provide key data related to utilization statistics, how online information can be used, what users want or expect from the Internet, outcomes or impacts, and quality and credibility of websites. These are important themes for understanding online cancer issues. However, this special issue of the Journal of Medical Internet Research seeks to recast these themes in a way that will facilitate pragmatic and applied means of employing data in prescriptive and interdisciplinary ways. This issue includes 14 papers that exemplify applications for the research framework recommended in this paper. This framework includes an expanded focus on the development and design of online cancer services, online consumer behavior/communication, behavior change, and living with cancer.

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Using the Internet for Surveys and Health Research

Gunther Eysenbach, Jeremy L. Wyatt (2002)

This paper concerns the use of the Internet in the research process, from identifying research issues through qualitative research, through using the Web for surveys and clinical trials, to pre-publishing and publishing research results. Material published on the Internet may be a valuable resource for researchers desiring to understand people and the social and cultural contexts within which they live outside of experimental settings, with due emphasis on the interpretations, experiences, and views of `real world' people. Reviews of information posted by consumers on the Internet may help to identify health beliefs, common topics, motives, information, and emotional needs of patients, and point to areas where research is needed. The Internet can further be used for survey research. Internet-based surveys may be conducted by means of interactive interviews or by questionnaires designed for self-completion. Electronic one-to-one interviews can be conducted via e-mail or using chat rooms. Questionnaires can be administered by e-mail (e.g. using mailing lists), by posting to newsgroups, and on the Web using fill-in forms. In "open" web-based surveys, selection bias occurs due to the non-representative nature of the Internet population, and (more importantly) through self-selection of participants, i.e. the non-representative nature of respondents, also called the `volunteer effect'. A synopsis of important techniques and tips for implementing Web-based surveys is given. Ethical issues involved in any type of online research are discussed. Internet addresses for finding methods and protocols are provided. The Web is also being used to assist in the identification and conduction of clinical trials. For example, the web can be used by researchers doing a systematic review who are looking for unpublished trials. Finally, the web is used for two distinct types of electronic publication. Type 1 publication is unrefereed publication of protocols or work in progress (a `post-publication' peer review process may take place), whereas Type 2 publication is peer-reviewed and will ordinarily take place in online journals.

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Patients' use of the Internet for medical information.

Joseph Diaz, Rebecca A Griffith, James J Ng … (2002)

To determine the percentage of patients enrolled in a primary care practice who use the Internet for health information, to describe the types of information sought, to evaluate patients' perceptions of the quality of this information, and to determine if patients who use the Internet for health information discuss this with their doctors. Self-administered mailed survey. Patients from a primary care internal medicine private practice. Randomly selected patients ( N=1,000) were mailed a confidential survey between December 1999 and March 2000. The response rate was 56.2%. Of the 512 patients who returned the survey, 53.5% (274) stated that they used the Internet for medical information. Those using the Internet for medical information were more educated ( P <.001) and had higher incomes ( P <.001). Respondents used the Internet for information on a broad range of medical topics. Sixty percent felt that the information on the Internet was the "same as" or "better than" information from their doctors. Of those using the Internet for health information, 59% did not discuss this information with their doctor. Neither gender, education level, nor age less than 60 years was associated with patients sharing their Web searches with their physicians. However, patients who discussed this information with their doctors rated the quality of information higher than those who did not share this information with their providers. Primary care providers should recognize that patients are using the World Wide Web as a source of medical and health information and should be prepared to offer suggestions for Web-based health resources and to assist patients in evaluating the quality of medical information available on the Internet.

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How the internet affects patients' experience of cancer: a qualitative study.

Linda Rozmovits, Carol Dumelow, Sue Ziebland … (2004)

To explore how men and women with cancer talk about using the internet. Qualitative study using semistructured interviews collected by maximum variation sampling. Respondents recruited throughout the United Kingdom during 2001-2. 175 men and women aged 19-83 years, with one of five cancers (prostate, testicular, breast, cervical, or bowel) diagnosed since 1992 and selected to include different stages of treatment and follow up. Internet use, either directly or via friend or family, was widespread and reported by patients at all stages of cancer care, from early investigations to follow up after treatment. Patients used the internet to find second opinions, seek support and experiential information from other patients, interpret symptoms, seek information about tests and treatments, help interpret consultations, identify questions for doctors, make anonymous private inquiries, and raise awareness of the cancer. Patients also used it to check their doctors' advice covertly and to develop an expertise in their cancer. This expertise, reflecting familiarity with computer technology and medical terms, enabled patients to present a new type of "social fitness." Cancer patients used the internet for a wide range of information and support needs, many of which are unlikely to be met through conventional health care. Serious illness often undermines people's self image as a competent member of society. Cancer patients may use the internet to acquire expertise to display competence in the face of serious illness.

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Author and article information

Contributors

Department of CommunicationGeorge Mason UniversityThompson Hall, MS 3D6Fairfax, VA 22030-4444USA+1 703 993 1094+1 703 993 1096gkreps@gmu.edu

Journal

Journal ID (nlm-ta): J Med Internet Res

Journal ID (publisher-id): JMIR

Title: Journal of Medical Internet Research

Publisher: Gunther Eysenbach (Centre for Global eHealth Innovation, Toronto, Canada )

ISSN (Electronic): 1438-8871

Publication date Collection: Jul-Aug 2005

Publication date (Electronic): 1 July 2005

Volume: 7

Issue: 3

Electronic Location Identifier: e34

Affiliations

[3] ³simpleSchool of Communication simpleOhio State University ColumbusOHUSA

[2] ²simpleDepartment of Communication simpleGeorge Mason University FairfaxVAUSA

[1] ¹simpleCollege of Communication Arts and Sciences simpleDepartment of Telecommunication, Information Studies and Media simpleMichigan State University East LansingMIUSA

Article

Publisher ID: v7i3e34

DOI: 10.2196/jmir.7.3.e34

PMC ID: 1550666

PubMed ID: 15998625

SO-VID: c31d961e-de56-4cc0-b462-48144038e8f2

Copyright © © Pamela Whitten, Gary L Kreps, Matthew S Eastin. Originally published in the Journal of Medical Internet Research (http://www.jmir.org), 1.7.2005. Except where otherwise noted, articles published in the Journal of Medical Internet Research are distributed under the terms of the Creative Commons Attribution License (http://www.creativecommons.org/licenses/by/2.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited, including full bibliographic details and the URL (see "please cite as" above), and this statement is included.

History

Date received : 2 May 2005

Date revision requested : 21 June 2005

Date revision received : 23 June 2005

Date accepted : 24 June 2005

Creating a Framework for Online Cancer Services Research to Facilitate Timely and Interdisciplinary Applications

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Abstract

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Online interactive cancer simulations and demos

Most cited references 66

Using the Internet for Surveys and Health Research

Patients' use of the Internet for medical information.

How the internet affects patients' experience of cancer: a qualitative study.

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