Open AccessImplementing Ethically-Sound Research on Online Health-Related Support Groups
Author(s) -
Elizabeth Kennedy
Publication year - 2008
Publication title -
the internet journal of allied health sciences and practice
Language(s) - English
Resource type - Journals
ISSN - 1540-580X
DOI - 10.46743/1540-580x/2008.1217
Subject(s) - the internet , context (archaeology) , qualitative research , health care , public relations , resource (disambiguation) , research ethics , psychology , knowledge management , internet privacy , medical education , medicine , world wide web , political science , sociology , computer science , paleontology , social science , computer network , psychiatry , law , biology
Purpose: The purpose of this article is to review the benefits and dilemmas associated with ethically-sound literary research and to provide guidelines for qualitative research within the context of online health-related support groups.Summary of Key Points: The Internet is a significant resource for the acquisition of healthcare information for healthcare consumers. For those seeking assistance with health-related disabilities, online support groups provide opportunities to share information, to share experiences, and to obtain support. Healthcare professionals recognize the text-based communications used by these groups as a rich data source for client-centered qualitative research. This article highlights the possible risks arising from Internet research to the rights and safety of research participants. Potential rewards to be gained from this type of research include improved patient-centered outcomes, improved service delivery models, and improved education programs for clients and professionals. This article presents a summary of Internet research literature and currently accepted research methodology to explain the ethical challenges related to balancing the benefits of listserv research with protection of individual rights. Recommendations for ethically-sound research within the context of online support groups are summarized based on traditional research policy and guidelines, recommendations from interdisciplinary groups, and opinions from experienced online researchers.