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Articles

Peer-Generated Health Information: The Role of Online Communities in Patient and Caregiver Health Decisions

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References

  • An, L. C., Schillo, B. A., Saul, J. E., Wendling, A. H., Klatt, C. M., Berg, C. J., … Luxenberg, M. G. (2008). Utilization of smoking cessation informational, interactive, and online community resources as predictors of abstinence: Cohort study. Journal of Medical Internet Research, 10(5), e55. doi:10.2196/jmir.1018
  • Baker, L., Wagner, T. H., Singer, S., & Bundorf, M. K. (2003). Use of the Internet and e-mail for health information: Results from a national survey. Journal of the American Medical Association, 289(18), 2400–2406. doi:10.1001/jama.289.18.2400
  • Banfield, M. A., Barney, L. J., Griffiths, K. M., & Christensen, H. M. (2012). Australian mental health consumers’ priorities for research: Qualitative findings from the SCOPE for Research project. Health Expectations. Advance online publication. doi:10.1111/j.1369-7625.2011.00763.x
  • Bender, J. L., Jimenez-Marroquin, M., & Jadad, A. R. (2011). Seeking support groups on Facebook: A content analysis of breast cancer groups. Journal of Medical Internet Research, 13(1), e16. doi:10.2196/jmir.1560
  • Berland, G. K., Elliott, M. N., Morales, L. S., Algazy, J. I., Kravitz, R. L., Broder, M. S., … McGlynn, E. A. (2001). Health information on the Internet: Accessibility, quality, and readability in English and Spanish. Journal of the American Medical Association, 285(20), 2612–2621. doi:10.1001/jama.285.20.2612
  • Bosslet, G. T., Torke, A. M., Hickman, S. E., Terry, C. L., & Helft, P. R. (2011). The patient-doctor relationship and online social networks: Results of a national survey. Journal of General Internal Medicine, 26(10), 1168–1174. doi:10.1007/s11606-011-1761-2
  • Briss, P., Rimer, B., Reilley, B., Coates, R. C., Lee, N. C., Mullen, P., … Lawrence, R. (2004). Promoting informed decisions about cancer screening in communities and healthcare systems. American Journal of Preventive Medicine, 26(1), 67–80. doi:10.1016/j.amepre.2003.09.012
  • Brunson, E. K. (2013). The impact of social networks on parents’ vaccination decisions. Pediatrics, 131(5), e1397–e1404. doi:10.1542/peds.2012-2452
  • Charles, C., Gafni, A., & Whelan, T. (1997). Shared decision-making in the medical encounter: What does it mean? (Or it takes at least two to tango). Social Science & Medicine, 44(5), 681–692. doi:10.1016/S0277-9536(96)00221-3
  • Charmaz, K. (2003). Grounded theory. In J. A. Smith (Ed.), Qualitative psychology: A practical guide to research methods (pp. 81–110). London, UK: Sage.
  • Charmaz, K., & Mitchell, R. G. (2001). Grounded theory in ethnography. In P. Atkinson, A. Coffey, S. Delamont, J. Lofland, & L. Lofland (Eds.), Handbook of ethnography (pp. 160–174). London, UK: Sage.
  • Chung, J. E. (2014). Social networking in online support groups for health: How online social networking benefits patients. Journal of Health Communication, 19(6), 639–659. doi:10.1080/10810730.2012.757396
  • Cline, R. J. W., & Haynes, K. M. (2001). Consumer health information seeking on the Internet: The state of the art. Health Education Research, 16(6), 671–692. doi:10.1093/her/16.6.671
  • Deber, R. B., Kraetschmer, N., & Irvine, J. (1996). What role do patients wish to play in treatment decision making? Archives of Internal Medicine, 156(13), 1414–1420. doi:10.1001/archinte.1996.00440120070006
  • Denzin, N. K. (1970). The research act. Chicago, IL: Aldine.
  • Dutta, M. J., & Feng, H. (2007). Health orientation and disease state as predictors of online health support group use. Health Communication, 22(2), 181–189. doi:10.1080/10410230701310323
  • Elwyn, G., Frosch, D., Thomson, R., Joseph-Williams, N., Lloyd, A., Kinnersley, P., … Barry, M. (2012). Shared decision making: A model for clinical practice. Journal of General Internal Medicine, 27(10), 1361–1367. doi:10.1007/s11606-012-2077-6
  • Eysenbach, G., Powell, J., Englesakis, M., Rizo, C., & Stern, A. (2004). Health related virtual communities and electronic support groups: Systematic review of the effects of online peer to peer interactions. British Medical Journal, 328(7449), 1–6. doi:10.1136/bmj.328.7449.1166
  • Fox, F. E., Morris, M., & Rumsey, N. (2007). Doing synchronous online focus groups with young people: Methodological reflections. Qualitative Health Research, 17(4), 539–547. doi:10.1177/1049732306298754
  • Fox, S. (2011a). Health topics. Retrieved from the Pew Internet & American Life Project website: http://www.pewinternet.org/Reports/2011/HealthTopics.aspx
  • Fox, S. (2011b). Peer-to-peer healthcare. Retrieved from the Pew Internet & American Life Project website: http://www.pewinternet.org/Reports/2011/P2PHealthcare.aspx
  • Fox, S., & Duggan, M. (2013). Health online 2013. Retrieved from the Pew Internet & American Life Project website: http://www.pewinternet.org/Reports/2013/Health-online.aspx
  • Fox, S., & Jones, S. (2009). The social life of health information. Retrieved from the Pew Internet & American Life Project website: http://www.pewinternet.org/Reports/2009/8-The-Social-Life-of-Health-Information.aspx
  • Frost, J. H., & Massagli, M. P. (2008). Social uses of personal health information within PatientsLikeMe, an online patient community: What can happen when patients have access to one another’s data. Journal of Medical Internet Research, 10(3), e15. doi:10.2196/jmir.1053
  • Gibbs, G. (2007). Analyzing qualitative data. London, UK: Sage.
  • Hesse, B. W., Moser, R. P., & Rutten, L. J. (2010). Surveys of physicians and electronic health information. New England Journal of Medicine, 362(9), 859–860. doi:10.1056/NEJMc0909595
  • Informed Medical Decisions Foundation. (2012). Six steps of shared decision making (SDM). Retrieved from http://www.slideshare.net/fimdm/six-steps-of-shared-decision-making
  • Jackson, C., Cheater, F. M., & Reid, I. (2008). A systematic review of decision support needs of parents making child health decisions. Health Expectations, 11(3), 232–251. doi:10.1111/hex.2008.11.issue-3
  • Jodlowski, D., Sharf, B. F., Nguyen, L. C., Haidet, P., & Woodard, L. D. (2007). “Screwed for life”: Examining identification and division in addiction narratives. Communication & Medicine, 4(1), 15–26.
  • Kim, B. H., Wallington, S. F., Makambi, K. H., & Adams-Campbell, L. L. (2015). Social networks and physical activity behaviors among cancer survivors: Data from the 2005 Health Information National Trends Survey. Journal of Health Communication, 20(6), 656–662. doi:10.1080/10810730.2015.1018576
  • Kjos, A. L., Worley, M. M., & Schommer, J. C. (2011). Medication information seeking behavior in a social context: The role of lay and professional social network contacts. Innovations in Pharmacy, 2(4), 63.
  • Lee, C., Wang, S., & Lewis, N. (2010). Internet use leads cancer patients to be active health care consumers. Patient Education and Counseling, 8(1S), S63–S69. doi:10.1016/j.pec.2010.09.004
  • Lee, C.-J. (2008). Does the Internet displace health professionals? Journal of Health Communication, 13(5), 450–464. doi:10.1080/10810730802198839
  • Lee, S. Y., & Hawkins, R. (2010). Why do patients seek an alternative channel? The effects of unmet needs on patients’ health-related Internet use. Journal of Health Communication, 15(2), 152–166. doi:10.1080/10810730903528033
  • Levy, M., Matiesanu, E., Mitskaviets, I., Riley, M., & Daniels, D. (2006). Prescription drug advertising: Benchmarking and identifying strategies to increase consumers’ engagement with online ads (Report No. HTH06-C04). New York, NY: Jupiter Research.
  • Macias, W., Lewis, L. S., & Smith, T. L. (2005). Health-related message boards/chat rooms on the Web: Discussion content and implications for pharmaceutical sponsorships. Journal of Health Communication, 10(3), 209–223. doi:10.1080/10810730590934235
  • Macias, W., & McMillan, S. J. (2008). The return of the house call: The role of Internet-based interactivity in bringing health information home to older adults. Health Communication, 23(1), 34–44. doi:10.1080/10410230701805174
  • Manhattan Research. (2005). For 31.6 million U.S. adults, the Internet is the first stop for health care decisions. Retrieved from http://products.manhattanresearch.com/newsroom/Press_Releases/11212005.aspx
  • McMullan, M. (2006). Patients using the Internet to obtain health information: How this affects the patient-health professional relationship. Patient Education and Counseling, 63(1–2), 24–28. doi:10.1016/j.pec.2005.10.006
  • Metzger, M. J., Flanagin, A. J., & Medders, R. B. (2010). Social and heuristic approaches to credibility evaluation online. Journal of Communication, 60(3), 413–439. doi:10.1111/jcom.2010.60.issue-3
  • Miles, M. B., & Huberman, A. M. (1994). Qualitative data analysis. Thousand Oaks, CA: Sage.
  • Modahl, M., Tompsett, L., & Moorhead, T. (2011). Doctors, patients, and social media. Retrieved from http://www.quantiamd.com/q-qcp/doctorspatientsocialmedia.pdf
  • Morgan, D. (1998). The focus group guidebook. Thousand Oaks, CA: Sage.
  • Murray, E., Lo, B., Pollack, L., Donelan, K., Catania, J., White, M., … Turner, R. (2003). The impact of health information on the Internet on the physician-patient relationship: Patient perceptions. Archives of Internal Medicine, 163(14), 1727–1733. doi:10.1001/archinte.163.14.1727
  • National Cancer Institute. (2014). Health Information National Trends Survey (HINTS) electronic codebook. Retrieved from http://hints.cancer.gov/questions.aspx
  • Oshima, L. O., & Emanuel, E. J. (2013). Shared decision making to improve care and reduce costs. New England Journal of Medicine, 368(1), 6–8. doi:10.1056/NEJMp1209500
  • Poehlman, J. A., Rupert, D. J., Ray, S. E., & Moultrie, R. R. (2015, August). How do virtual and traditional focus groups compare? Cost, recruitment, and participant perceptions. Presented at the National Conference on Health Communication, Marketing, and Media, Atlanta, GA.
  • Popenko, N. A., Devcic, Z., Karimi, K., & Wong, B. J. (2012). The virtual focus group: A modern methodology for facial attractiveness rating. Plastic and Reconstructive Surgery, 130(3), 455e–461e. doi:10.1097/PRS.0b013e31825dcb48
  • Rainie, L. (2010). Online health seeking: How social networks can be healing communities. Retrieved from the Pew Internet & American Life Project website: http://www.pewinternet.org/Presentations/2010/Oct/North-Atlantic-Health-Science-Libraries.aspx
  • Richardson, C. R., Buis, L. R., Janney, A. W., Goodrich, D. E., Sen, A., Hess, M. L., … Piette, J. D. (2010). An online community improves adherence in an Internet-mediated walking program: Part 1. Results of a randomized controlled trial. Journal of Medical Internet Research, 12(4), e71. doi:10.2196/jmir.1338
  • Rimer, B. K., Briss, P. A., Zeller, P. K., Chan, E. C. Y., & Woolf, S. H. (2004). Informed decision making: What is its role in cancer screening? Cancer, 101(5 Suppl.), 1214–1228. doi:10.1002/cncr.20512
  • Ritchie, J., & Lewis, J. (Eds.). (2003). Qualitative research practice: A guide for social science students and researchers. London, UK: Sage.
  • Rupert, D. J., Moultrie, R. R., Gard Read, J., Amoozegar, J. B., Bornkessel, A. S., O’Donoghue, A. C., & Sullivan, H. W. (2014). Perceived healthcare provider reactions to patient and caregiver use of online health communities. Patient Education and Counseling, 96(3), 320–326.
  • Savolainen, R. (2011). Judging the quality and credibility of information in Internet discussion forums. Journal of the American Society for Information Science and Technology, 62(7), 1243–1256. doi:10.1002/asi.v62.7
  • Setoyama, Y., Nakayama, K., & Yamazaki, Y. (2009). Peer support from online community on the Internet among patients with breast cancer in Japan. Studies in Health Technology and Informatics, 146, 886.
  • Setoyama, Y., Yamazaki, Y., & Nakayama, K. (2011). Comparing support to breast cancer patients from online communities and face-to-face support groups. Patient Education and Counseling, 85(2), e95–e100. doi:10.1016/j.pec.2010.11.008
  • Smith, K. P., & Christakis, N. A. (2008). Social networks and health. Annual Review of Sociology, 34, 405–418. doi:10.1146/annurev.soc.34.040507.134601
  • Tates, K., Zwaanswijk, M., Otten, R., van Dulmen, S., Hoogerbrugge, P. M., Kamps, W. A., & Bensing, J. M. (2009). Online focus groups as a tool to collect data in hard-to-include populations: Examples from paediatric oncology. BMC Medical Research Methodology, 9, 15. doi:10.1186/1471-2288-9-15
  • Tustin, N. (2010). The role of patient satisfaction in online health information seeking. Journal of Health Communication, 15(1), 3–17. doi:10.1080/10810730903465491
  • Von Knoop, C., Lovich, D., Silverstein, M. B., & Tutty, M. (2003). Vital signs: E-health in the United States. Retrieved from https://www.bcgperspectives.com/content/articles/health_care_ehealth_in_the_united_states/
  • Wagner, T. H., Baker, L. C., Bundorf, M. K., & Singer, S. (2004). Use of the Internet for health information by the chronically ill. Preventing Chronic Disease, 1(4), A13.
  • Wald, H. S., Dube, C. E., & Anthony, D. C. (2007). Untangling the Web: The impact of Internet use on health care and the physician-patient relationship. Patient Education and Counseling, 68(3), 218–224. doi:10.1016/j.pec.2007.05.016
  • Walther, J. B., Slovacek, C., & Tidwell, L. C. (2001). Is a picture worth a thousand words? Photographic images in long term and short term virtual teams. Communication Research, 28(1), 105–134. doi:10.1177/009365001028001004
  • Wang, Z., Walther, J. B., Pingree, S., & Hawkins, R. P. (2008). Health information, credibility, homophily, and influence via the Internet: Web sites versus discussion groups. Health Communication, 23(4), 358–368. doi:10.1080/10410230802229738
  • Wicks, P., Keininger, D. L., Massagli, M. P., de la Loge, C., Brownstein, C., Isojarvi, J., & Heywood, J. (2012). Perceived benefits of sharing health data between people with epilepsy on an online platform. Epilepsy and Behavior, 23(1), 16–23. doi:10.1016/j.yebeh.2011.09.026
  • Wicks, P., Massagli, M., Frost, J., Brownstein, C., Okun, S., Vaughan, T., … Heywood, J. (2010). Sharing health data for better outcomes on PatientsLikeMe. Journal of Medical Internet Research, 12(2), e19. doi:10.2196/jmir.1549

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