Methodological and ethical issues in Internet-mediated research in the field of health: An integrated review of the literature
Introduction
The Internet is a worldwide network of computers that allows the “sharing” or “networking” of information at remote sites. Every e-mail message, web page, chat session, and file transfer that moves outside of a private network uses the Internet.
The use of the Internet varies by country and demographic factors. Worldwide Internet usage was calculated at 6,449,697,060 at December 31, 2005, a 15.7% population penetration (Internet World Statistics [IWS], 2006). North America shows the highest usage (68% of the population), followed by Oceania/Australia (53%) and Europe (36%) with lowest usage in Africa (2.5%) (IWS, 2006).
While Internet access is higher amongst younger people (16–24 years) (DeBell, 2006) older adults are also engaging with the Internet. Around 1 in 10 men aged 80 and over and just over 1 in 20 women reported using the Internet in 2002 (Marmot, Banks, Blundell, Lessof, & Nazroo, 2002). Although older adults are currently under-represented amongst Internet users, they also appear to be the fastest growing group of users with a 6% increase from 9% to 15% in Internet usage in those aged 65 and over in the 2 years, 2003–2004 (Office for National Statistics [ONS], 2004). Approximately 10 million older adults use Internet communities to gain information on health issues (Moore, 2005).
In the field of health, web sites have successfully engaged with groups that may be considered as marginalized from the medium of the Internet including “senior surfers” (Moore, 2005), disadvantaged teenagers (Valaitis & Sword, 2005), people living with disabilities (Knight, Heaven, & Christie, 2002), people with dementia (Freeman, Clare, & Savitch, 2005), and people living with depression (Andersson, Bergstrom, & Hollandare, 2005).
The Internet has many uses within the field of health. It has been increasingly used to facilitate therapeutic interventions (Etter, 2006), promote training and education (Teel & Shaw, 2005), to set up and manage patient support groups (Gustafson et al., 1999, Lieberman &Goldstein, 2005), and to facilitate health research (Baernholdt and Clarke, 2006, Kralik et al., 2006). Examples of the above include a review of health behaviour changes after a diagnosis of cancer using online focus groups (Campbell et al., 2001) and web-based daily symptom reports and coping strategies of people living with rheumatoid arthritis (Kanzaki, Makimoto, Takemura, & Nobuyuki, 2004). To date it has been mainly psychologists who have employed the medium of the Internet in research (e.g. Farvolden, McBride, Bagby, & Ravitz, 2003). Nurses have yet to embrace the Internet as a tool for research more fully (Im & Chee, 2001) for example as a method of assessment e.g. symptom experience and severity and as a medium for delivering intervention programmes, for instance emotional or informational support (Hsuing, 2000).
The advantages of an Internet-mediated approach in the field of health include the ability to reach traditionally difficult-to-access groups such as rural populations, people living with illness and disability, and shift workers, and widens geographical access (Mann & Stewart, 2000). The Internet offers another route of participation in studies for those unable to leave their homes and for those who find reading common forms of print difficult (Research Surveys of Great Britain, 2001, Pilling et al., 2004; US Department of Commerce, 2002). The Internet may help to diffuse embarrassment, feelings of being judged or shyness (Valaitis & Sword, 2005) and may enhance disclosure (Joinson, 2002, Weisband & Kiesler1996, 1996). Internet studies present fewer barriers to participation such as keeping appointments or putting a questionnaire in the post (Stewart, Eckermann, & Zhou, 1998).
Challenges and potential barriers to using the Internet to facilitate health research include access to a computer and the computer literacy of the researcher, the ability to make contact with and recruit individuals, and developing relationships with participants (Mann & Stewart, 2000).
Debate and guidance on methodological issues in Internet-mediated research are relatively sparse. The CHEcklist for Reporting Results of Internet E-Surveys (CHERRIES) (Eysenbach, 2004) provides guidelines for the researcher writing up findings to promote full descriptions of Internet-mediated research. Reips (2002) offers some helpful advice on Internet-based psychological experiments. The web site www.websm.org hosts a range of articles on survey-based research. Advice on methodological considerations for both qualitative and quantitative social researches appears to be absent. Further debate is required to develop the Internet as a credible medium in data collection and the delivery of interventions.
This paper reviews the key methodological issues for Internet-mediated health research as raised in the current literature and current evidence on how these may be addressed.
Section snippets
Search strategy, inclusion and exclusion criteria
A bibliographic search of English language publications indexed in eight computerized databases (EBSCO, EMBASE, MedLine, PsycInfo, CINAHL, PubMed, Cochrane, and TRIP) was undertaken with no limit set for the data of publication. The keywords Internet, research, quality, credibility, reliability, and validity were used in all possible combinations, and mappings to headings made wherever possible. The search was augmented with follow-up references from article reference lists. Each paper was
Findings
The review of the papers highlighted three key issues that impact on the credibility of Internet-mediated health research, which are sampling bias, ethical issues in collecting data, and the validity of data collected.
Discussion
The literature to date highlights some outstanding concerns about Internet-mediated health research and also offers some guidance as to how to address or minimize threats to the credibility of the research.
A key issue remains the tension between convenience sampling and potential bias that can result from this. Claims that the large sample sizes generated through online recruitment cancel out bias are contestable; theoretically, there is no reason to believe that large convenience samples are
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