Experience-based information: The role of web-based patient networks in consumer health information services

Journal of Consumer Health on the Internet

Volumn 12, Issue 3, 2008, Pages 216-236

  Scola Streckenbach, Susan ^a  

^a University of Wisconsin Madison   (United States)

Author keywords

Blogs; Consumer empowerment; Discussion forums; Internet; Online support groups; Patient physician relationship; Social networks; Virtual communities; Web evaluation

Indexed keywords

EID: 70449359030     PISSN: 15398285     EISSN: 15398293     Source Type: Journal    
DOI: 10.1080/15398280802143657     Document Type: Article

References (73)

1. Josefsson, U. Coping with Illness Online: The Case of Patients' Online Communities. The Information Society 2 (2005): 143-53.
2. Wellman, B., and Gulia, A. Virtual Communities as Communities: Net Surfers Don't Ride Alone. In Communities in Cyberspace, edited by M. A. Smith and P. Kollock, 167-94. New York: Routledge, 1999.
3. Boulos, K.M., and Wheelert, S. The Emerging Web 2.0 Social Software: An Enabling Suite of Sociable Technologies in Health and Health Care Education. Health Information and Libraries Journal 24, no. 1 (March 2007): 2-23. Available: Accessed: November 30, 2007.
4. Sostack, M. From Web 2.0 to Health Literacy: The Buzz at MLA 07. Information Today 24, no. 7 (2007): 28.
5. Jacobson, P. Empowering the Physician-Patient Relationship: The Effect of the Internet. Canadian Journal of Library and Information Practice and Research 1, no. 2 (2007). Available: Accessed: December 7, 2007.
6. Murero, M., and Rice, R., eds. The Internet and Health Care: Theory, Research and Practice. Mahwah, NJ: Lawrence Erlbaum, 2006.
7. Rees, A. Communication in the Physician-Patient Relationship. Bulletin of the Medical Library Association 81, no. 1 (January 1993): 1-10.
8. Demiris, G. The Diffusion of Virtual Communities in Healthcare: Concepts and Challenges. Patient Education and Counseling 62 (August 2006): 178-88. Available: Accessed: October 15, 2007. doi:10.1016=j.pec.2005.10.003
9. Rodgers, S., and Chen, Q. Internet Community Group Participation: Psychosocial Benefits for Women with Breast Cancer. Journal of Computer-Mediated Communication 10, no. 4 (July 2005). Available: Accessed: October 15, 2007. doi:10.1111=j.1083-6101.2005. tb00268.x
10. Badcott, D. The Expert Patient: Valid Recognition or False Hope? Medicine, Health Care and Philosophy 8, no. 2 (May 1, 2005): 173-8. Available: Accessed: December 5, 2007. doi:10.1007= s11019-005-2275-7
11. Kral, G. Online Communities for Mutual Help: Fears, Fiction, and Facts. In The Internet and Health Care: Theory, Research and Practice, Edited by R. Murero and R. Rice, 215-232. Mahwah, NJ: Lawrence Erlbaum, 2006.
12. Radin, P. 'To Me, It's My Life': Medical Communication, Trust, and Activism in Cyberspace. Social Science and Medicine 62 (February 2006): 591-601. Available: Accessed: October 15,2007. doi:10.1016=j.socscimed.2005.06.022
13. Case, D.; Andrews, J.; Johnson, J.; David, S.; and Allard, S. Avoiding Versus Seeking: The Relationship of Information Seeking to Avoidance, Blunting, Coping, Dissonance, and Related Concepts. Journal of the Medical Library Association 93, no. 3 (July 2005): 353-62. Available: Accessed: November 30, 2007.
14. Preece, J., and Maloney-Krichmar, D. Online Communities: Design, Theory and Practice. Journal of Computer-Mediated Communication 10, no. 4 (July 2005). Available: Accessed: December 1, 2007. doi:10.1111=j.1083-6101.2005.tb00264.x
15. Haythornethwaite, C., and Wellman, B. The Internet in Everyday Life. Malden, MA: Blackwell Publishing, 2002.
16. Wellman, B., and Wetherell, C. Social Network Analysis of Historical Communities: Some Questions from the Present for the Past. The History of the Family 1, no. 1 (1996): 97-121.
17. Bell, D. An Introduction to Cybercultures. New York: Routledge, 2001.
18. Fogel, J.; Albert, S.; Schnabel, F.; Ditkoff, B.; and Neugent, A. Internet Use and Social Support in Women with Breast Cancer. Health Psychology 21, no. 4 (2002): 398-404.
19. Shaw, B.; Yeob Han, J.; Baker, T. et al. How Women with Breast Cancer Learn Using Interactive Cancer Communication Systems. Health Education Research 22, no. 1 (2007): 108-19.
20. Hoffman-Goetz, L., and Donelle, L. Chat-Room Computer-Mediated Support on Health Issues for Aboriginal Women. Health Care for Women International 4, no. 28 (April 2007): 397-418. Available: Accessed: February 14, 2008. doi:10.1080=07399330601180057
21. Drentea, P., and Moren-Cross, J. L. Social Capital and Social Support on the Web: The Case of an Internet Mother Cite. Sociology of Health and Illness 27, no. 7 (November 2005): 920-43. Available: Accessed: October 15, 2007. doi: 10.1111=j.1467-9566.2005.00464.x
22. Beder, J. Cybersolace: Technology Built on Emotion. Social Work 50, no. 4 (October 1, 2005): 355-8.
23. Anderberg, P. Peer Assistance for Personal Assistance: Analysis of Online Discussions about Personal Assistance from a Swedish Web Forum for Disabled Persons. Disability and Society 22, no. 3 (May 2007): 251-65.
24. Thomas, A.; Ross, M.; and Harris, K. Coming Out Online: Interpretations of Young Men's Stories. Sexuality Research and Social Policy 4, no. 2 (June 2007): 5-17.
25. Hobye, M.; Johansen, C.; and Tjornjoj-Thomsen, T. Online Interactions: Effects of Storytelling in an Internet Breast Cancer Support Group. Psychooncology 14, no. 3 (March 2005): 211-20.
26. Beaudoin, C., and Tao, C. Benefiting from Social Capital in an Online Sup- port Group: An Empirical Study. Cyberpsychology Behavior 10, no. 4 (August 2007): 587-90.
27. Leiberman, M. Self-help Online: An Outcome Evaluation of Breast Cancer Bulletin Boards. Journal of Health Psychology 10, no. 6 (December 2005): 855-62.
28. Foundation for Improved Medical Decision Making. Available: Accessed: October 5, 2007.
29. Mazur, D.; Hickam, D.; and Mazur, M. The Role of Doctor's Opinion in Shared Decision Making: What Does Shared Decision Making Really Mean When Considering Invasive Medical Procedures? Health Expectations 8, no. 2 (June 2005): 97-102. Available: Accessed: December 5, 2007.
30. Ankem, K. Factors Influencing Information Needs among Cancer Patients: A Meta-Analysis. Library and Information Science Research 28, no. 1 (Spring 2006): 7-23. Accessed: November 30, 2007. doi:10.1016=j.lisr.2005.11.003
31. Feldman-Stewart, D.; Brennenstuhl, S.; McIssac, K. et al. A Systematic Review of Information in Decision Aids. Health Expectations 10, no. 1 (March 2007): 46-61.
32. Rier, D. Internet Social Support Groups as Moral Agents: The Ethical Dynamics of HIV{thorn}Status Disclosure. Sociology of Health and Illness 29, no. 7 (2007): 1043-58.
33. Eysenbach, G.; Powell, J.; Englesakis, M.; Rizo, C.; and Stern, A. HealthRelated Virtual Communities and Electronic Support Groups: Systematic Review of the Effects of Online Peer to Peer Interactions. British Medical Journal 328, no. 7449 (May 15, 2004): 1166-70.
34. Owen, J.; Klapow, J.; Roth, D.; and Tucker, D. Use of the Internet for Information and Support: Disclosure Among Persons with Breast and Prostate Cancer. Journal of Behavioral Medicine 27, no. 5 (October 2004): 491-505.
35. Evans, R.; Elwyn, G.; Edwards, A. et al. A Randomized Controlled Trial of the Effects of a Web-Based PSA Decision Aid, Prosdex. Protocol. BMC Family Practice 8, no. 58 (October 2007). Available: Accessed: February 13, 2008. doi:10.1186=1471-2296-8-58
36. Evans, R.; Edwards, A.; Brett, J.; et al. Reduction in Uptake of PSA Tests Following Decision Aids for Patients: A Systematic Review of Current Aids and Their Evaluations. Patient Education and Counseling 58 (2005): 13-26.
37. Krist, A.; Woolf, S.; Johnson, R.; and Kerns, J. Patient Education on Prostate Cancer Screening and Involvement in Decision Making. Annals of Family Medicine 5, no. 2 (March=April 2007): 112-9.
38. Thomson Health Care. Healthy Decisions Guide: Early Stage Prostate Cancer. Available: Accessed: February 13, 2008.
39. Yancy, C. Online Program Aids Heart Patients and Their Doctors. Circulation 106 (2002): 2299-2300. Available: Accessed: February 13, 2008.
40. Broom, A. Virtually He@lthy: The Impact of Internet Use on Disease Experience and the Doctor-Patient Relationship. Qualitative Health Research 15, no. 3 (2005): 325-45. Available: Accessed: February 13, 2008. doi:10.1177=1049732304272916
41. Gagliardi, A., and Jadad, A.R. Examination of Instruments Used to Rate Quality of Health Information on the Internet: Chronicle of a Voyage with an Unclear Destination. British Medical Journal 324, no. 7337 (March 9, 2002): 569-73.
42. Sellitto, C., and Burgess, S. Towards a Weighted Average Framework for Evaluating Web-Located Health Information. Journal of Information Science 31, no. 4 (2005): 260-72.
43. Crespo, J. Training the Health Information Seeker: Quality Issues in Health Information Web Sites. Library Trends 53, no. 2 (October 1, 2004): 360-74. Available: Accessed: November 30,2007.
44. Picerno, P. Health Information On and Off the Internet: What Part Can and Do Public Libraries Play? Journal of Consumer Health on the Internet 9, no. 4 (December 2005): 11-25. Available: Accessed: December 7, 2007. doi:10.1300=J381v09n04 02
45. Kim, S., and Chung, D. Characteristics of Cancer Blog Users. Journal of the Medical Library Association 95, no. 4 (October 2007): 445-50. Available: Accessed:November 30, 2007. doi:10.3163=1536-5050.95.4.445
46. Eysenbach, G.; Powell, J.; Kuss, O.; and Eun-Ryoung, S. Empirical Studies Assessing the Quality of Health Information for Consumers on the World Wide Web: A Systematic Review. Journal of the American Medical Association 287, no. 20 (May 22=29, 2002): 2691-700.
47. Chan, S.K., and Cheng, H.L. A Comparison of Online and Offline Friend- ship Qualities at Different Stages of Relationship Development. Journal of Social and Personal Relationships 21 (June 2004): 305-20. Available: Accessed: November 30, 2007. doi:10.1177=0265407504042834
48. Leimeister, J., and Krcmar, H. Evaluation of a Systematic Design for a Virtual Patient Community. Journal of Computer-Mediated Communication 10, no. 4 (July 2005). Available: Accessed: October 15, 2007. doi:10.1111=j.1083-6101.2005.tb00269.x
49. Preece, J.; Nonneke, B.; and Andrews, D. Top Five Reasons for Lurking: Improving Community Experiences for Everyone. Computers in Human Behavior 20 (2004): 201-23.
50. Preece, J. Online Communities: Designing Usability and Supporting Sociability. New York: Wiley, 2000.
51. The DISCERN Instrument. DISCERN. (1997). Available: Accessed: February 14, 2008.
52. National Centre for Complementary and Alternative Medicine (NCCAM). 10 Things to Know About Evaluating Medical Resources on the Web. (2006). Available: Accessed: February 14, 2008.
53. Health on the Net Foundation. HON Code of Conduct (HONcode) for Medical and Health Web Sites. Available: Accessed: February 14, 2008.
54. Minervation. LIDA: Minervation Validation Instrument for Health Care Web Sites. Available: Accessed: February 14, 2008.
55. Breckons, M.; Jones, R.; Morris, J.; and Richardson, J. What do Evaluation Instruments Tell Us About the Quality of Complementary Medicine on the Internet? Journal of Medical Internet Research 10, no. 1 (2008). Available: http://www.jmir.org/2008/1/e3/HTML. Accessed: February 13, 2008. doi:10.2196=j-jmir:961
56. Walshe, E. Medici Digerati: The Efficacy of the Health Consumer in Digital Research and the Utility of Secondary Evaluative Resources. Journal of Consumer Health on the Internet 7, no. 3 (2003): 23-34. Available: Accessed: December 1, 2007. doi:10.1300=J381v07n03 03
57. Kroski, E. The Social Tools of Web 2.0: Opportunities for Academic Libraries. Choice 44, no. 12 (August 2007): 2011-21.
58. Burnett, G. Information Exchange in Virtual Communities: A Typology. (2000). Available: Accessed: October 27, 2007.
59. Burnett, G., and Buerkle, H. Information Exchange in Virtual Communities: A Comparative Study. Journal of Computer-Mediated Communication 9, no. 2 (January 2004). Available: Accessed: October 15, 2007. doi:10.1111=j.1083-6101.2004.tb00286.x
60. Kim, K.; Lustria, M.; Burke, D.; and Kwon, N. Predictors of Cancer Information Overload. Information Research 12, no. 4 (2007). Available: Accessed: December 7, 2007.
61. Turkle, S. Life on the Screen: Identity in the Age of the Internet. New York: Simon and Schuster, 1997.
62. Blank, T., and Admas-Blodnieks, M. The Who and What of Usage of Two Cancer Online Communities. Computers in Human Behavior 23, no. 3 (May 2007): 1249-57. Available: Accessed: December 4, 2007. doi:10.1016=j.chb.2004.12.003
63. Lasker, J.; Sogolow, E.; and Sharim, R. The Role of an Online Community for People with a Rare Disease: Content Analysis of Messages Posted on a Primary Biliary Cirrhosis Mailinglist. Journal of Medical Internet Research 7, no. 1 (2005). Available: Accessed: December 3, 2007.
64. Esquivel, A.; Meric-Bernstam, F.; and Bernstam, E. Accuracy and SelfCorrection of Information Retrieved from an Internet Breast Cancer List: Content Analysis. British Medical Journal 332 (April 22, 2006): 939-44. Available: Accessed: December 4, 2007. doi:10.1136=bmj.38753.524201
65. Conner, E. Medical Librarian 2.0. Medical Reference Services Quarterly 26, no. 1 (Spring 2007): 1-15. Available: Accessed: November 15, 2007. doi:10.1300=J115v26n01 01
66. Volk, R. Expert Searching in Consumer Health: An Important Role for Librarians in the Age of the Internet and the Web. Journal of the Medical Library Association 95, no. 2 (April 2007): 203-7. Available: Accessed: December 1, 2007. doi: 10.3163= 1536-5050.95.2.203
67. Swartz, N. A Prescription for Electronic Health Records. Information Management Journal 38, no. 4 (July 1, 2004): 20-6.
68. Swartz, N. Americans Prefer Electronic Health Records. Information Management Journal 41, no. 4 (July 1, 2007): 8.
69. Albert, K.M. Integrating Knowledge-based Resources into the Electronic Health Record: History, Current Status, and Role of Librarians. Medical Reference Services Quarterly 26, no. 3 (July 2007): 1-19. Available: Accessed: December 4, 2007. doi:10.1300=J115v25n03 01
70. O'Sullivan, D.; McLoughlin, E.; Bertoletto, M.; and Wilson, D. Mobile Case-based Decision Support for Intelligent Patient Knowledge Management. Health Informatics Journal 13, no. 3 (September 2007): 179-94.
71. Shedlock, J., and Walton, L.K. Developing a Virtual Community for Health Sciences Library Book Selection: Doody's Core Titles. Journal of the Medical Library Association 94, no. 1 (January 2006): 61-6. Available: Accessed: December 1, 2007.
72. Kraft, M. Integrating and Promoting Medical Podcasts into the Library Collection. Medical Reference Services Quarterly 26, no. 1 (Spring 2007): 27-35. Available: Accessed: November 30, 2007. doi:10.1300=J115v26n01 03
73. Van Moorsel, G. Internet Connectivity Can Positively Influence Total Patient Experience: Options and Opportunities for Library Leadership. Journal of Hospital Librarianship 7, no. 1 (June 2007): 1-14. Available: Accessed: February 13, 2008. doi:10.1300=J186v07n01 01