Managing the personal side of health: How patient expertise differs from the expertise of clinicians

Journal of Medical Internet Research

Volumn 13, Issue 3, 2011, Pages

  Hartzler, Andrea ^a   Pratt, Wanda ^a,b  

^a UNIVERSITY OF WASHINGTON SCHOOL OF MEDICINE   (United States)

^b UNIVERSITY OF WASHINGTON   (United States)

Author keywords

Attitudes; Community networks; Consumer health informatics; Health knowledge; Online communities; Patient expertise; Peer group; Personalized health; Practice; Social support

Indexed keywords

ADAPTIVE BEHAVIOR; ADULT; AGED; ARTICLE; ATTITUDE TO HEALTH; BREAST TUMOR; CAREGIVER; COMPARATIVE STUDY; FEMALE; HUMAN; HUMAN RELATION; INTERPERSONAL COMMUNICATION; METHODOLOGY; MIDDLE AGED; PATIENT ATTITUDE; PATIENT PREFERENCE; PROBLEM SOLVING; PSYCHOLOGICAL ASPECT; QUALITY OF LIFE; SELF CARE; SOCIAL SUPPORT; UNITED STATES;

ADAPTATION, PSYCHOLOGICAL; ADULT; AGED; BREAST NEOPLASMS; CAREGIVERS; COMMUNICATION; FEMALE; HEALTH KNOWLEDGE, ATTITUDES, PRACTICE; HUMANS; INTERPERSONAL RELATIONS; MIDDLE AGED; PATIENT PREFERENCE; PROBLEM SOLVING; QUALITY OF LIFE; SELF CARE; SICK ROLE; SOCIAL SUPPORT; UNITED STATES;

EID: 80053500747     PISSN: None     EISSN: 14388871     Source Type: Journal    
DOI: 10.2196/jmir.1728     Document Type: Article

References (87)

1. Paterson B, Thorne S. Developmental evolution of expertise in diabetes self-management. Clin Nurs Res 2000 Nov;9(4):402-419. [Medline: 11881697]
2. Paterson BL, Thorne S, Dewis M. Adapting to and managing diabetes. Image J Nurs Sch 1998;30(1):57-62. [Medline: 9549943]
3. Benner P, Wrubel J. The Primacy of Caring: Stress and Coping in Health and Illness. Reading, MA: Addison Wesley; 1988.
4. Petersen A. The best experts: the narratives of those who have a genetic condition. Soc Sci Med 2006 Jul;63(1):32-42. [doi: 10.1016/j.socscimed.2005.11. 068] [Medline: 16431006] (Pubitemid 43668413)
5. Helgeson VS, Cohen S. Social support and adjustment to cancer: reconciling descriptive, correlational, and intervention research. Health Psychol 1996 Mar;15(2):135-148. [Medline: 8681922] (Pubitemid 126468487)
6. Jacobson DE. Types and timing of social support. J Health Soc Behav 1986 Sep;27(3):250-264. [Medline: 3772062]
7. Weiss RS. The provisions of social relationships. In: Rubin Z, editor. Doing Unto Others: Joining, Molding, Conforming, Helping, Loving. Englewood Cliffs, NJ: Prentice-Hall; 1974:17-26.
8. Campbell HS, Phaneuf MR, Deane K. Cancer peer support programs-do they work? Patient Educ Couns 2004 Oct;55(1):3-15. [doi: 10.1016/j.pec.2003.10.001] [Medline: 15476984]
9. Hoey LM, Ieropoli SC, White VM, Jefford M. Systematic review of peer-support programs for people with cancer. Patient Educ Couns 2008 Mar;70(3):315-337. [doi: 10.1016/j.pec.2007.11.016] [Medline: 18191527]
10. Berry DL, Ellis WJ, Woods NF, Schwien C, Mullen KH, Yang C. Treatment decision-making by men with localized prostate cancer: the influence of personal factors. Urol Oncol 2003;21(2):93-100. [Medline: 12856636] (Pubitemid 41123432)
11. Ruland CM. Decision support for patient preference-based care planning: effects on nursing care and patient outcomes. J Am Med Inform Assoc 1999;6(4):304-312. [Medline: 10428003] (Pubitemid 29328568)
12. Wykurz G, Kelly D. Developing the role of patients as teachers: literature review. BMJ 2002 Oct 12;325(7368):818-821 [FREE Full text] [Medline: 12376445] (Pubitemid 35177977)
13. Rozmovits L, Ziebland S. What do patients with prostate or breast cancer want from an Internet site? A qualitative study of information needs. Patient Educ Couns 2004 Apr;53(1):57-64. [doi: 10.1016/S0738-3991(03)00116-2] [Medline: 15062905] (Pubitemid 38519986)
14. Shaw BR, Han JY, Baker T, Witherly J, Hawkins RP, McTavish F, et al. How women with breast cancer learn using interactive cancer communication systems. Health Educ Res 2007 Feb;22(1):108-119 [FREE Full text] [doi: 10.1093/her/cyl051] [Medline: 16829544] (Pubitemid 46134980)
15. Diamond RJ, Little ML. Utilization of patient expertise in medication groups. Psychiatr Q 1984;56(1):13-19. [Medline: 6522524] (Pubitemid 16136401)
16. Burdick D. Rehabilitation of the breast cancer patient. Cancer 1975 Aug;36(2):645-648. [Medline: 808265]
17. Lorig KR, Sobel DS, Stewart AL, Brown BW, Bandura A, Ritter P, et al. Evidence suggesting that a chronic disease self-management program can improve health status while reducing hospitalization: a randomized trial. Med Care 1999 Jan;37(1):5-14. [Medline: 10413387]
18. Weinberg N, Schmale J, Uken J, Wessel K. Online help: cancer patients participate in a computer-mediated support group. Health Soc Work 1996 Feb;21(1):24-29. [Medline: 8626154] (Pubitemid 126432471)
19. Sharf BF. Communicating breast cancer on-line: support and empowerment on the Internet. Women Health 1997;26(1):65-84. [doi: 10.1300/J013v26n01-05] [Medline: 9311100] (Pubitemid 27462504)
20. Klemm P, Hurst M, Dearholt SL, Trone SR. Gender differences on Internet cancer support groups. Comput Nurs 1999;17(2):65-72. [Medline: 10194883]
21. Høybye MT, Johansen C, Tjørnhøj-Thomsen T. Online interaction. Effects of storytelling in an internet breast cancer support group. Psychooncology 2005 Mar;14(3):211-220. [doi: 10.1002/pon.837] [Medline: 15386774] (Pubitemid 40403152)
22. Winefield HR. Support provision and emotional work in an Internet support group for cancer patients. Patient Educ Couns 2006 Aug;62(2):193-197. [doi: 10.1016/j.pec.2005.07.002] [Medline: 16139466] (Pubitemid 43975701)
23. Preece J. Empathetic communities: Reaching out across the web. interactions 1998;5(2):32-43. [doi: 10.1145/274430.274435]
24. Hoch DB, Norris D, Lester JE, Marcus AD. Information exchange in an epilepsy forum on the World Wide Web. Seizure 1999 Feb;8(1):30-34. [doi: 10.1053/seiz.1998.0217] [Medline: 10091845] (Pubitemid 29117005)
25. Meier A, Lyons EJ, Frydman G, Forlenza M, Rimer BK. How cancer survivors provide support on cancer-related Internet mailing lists. J Med Internet Res 2007;9(2):e12 [FREE Full text] [doi: 10.2196/jmir.9.2.e12] [Medline: 17513283] (Pubitemid 47450393)
26. Civan A, Pratt W. Threading together patient expertise. AMIA Annu Symp Proc 2007 Oct 11;2007:140-144. [Medline: 18693814]
27. Elkin N. icrossing. 2008. How America Searches: Health and Wellness URL: http://www.icrossing.com/research/how-america-searches-health-and-wellness.php [accessed 2010-12-27] [WebCite Cache ID 5vIvESPSv]
28. Sarasohn-Kahn J. California HealthCare Foundation. 2008. The Wisdom of Patients: Health Care Meets Online Social Media URL: http://www.chcf.org/ publications/2008/04/the-wisdom-of-patients-health-care-meets-online-social- media [accessed 2010-12-26] [WebCite Cache ID 5vIvZHzFe]
29. Adams SA. Blog-based applications and health information: two case studies that illustrate important questions for Consumer Health Informatics (CHI) research. Int J Med Inform 2010 Jun;79(6):e89-e96. [doi: 10.1016/j.ijmedinf.2008.06.009] [Medline: 18701344]
30. Fox S, Jones S. Pew Internet. Washington, DC: Pew Internet & American Life Project; 2009 Jun. The social life of health information URL: http://www.pewinternet.org/~/media//Files/Reports/2011/Pew-P2PHealthcare-2011. pdf [accessed 2011-07-04] [WebCite Cache ID 5zxHcG9iD]
31. Fox S. Peer-to-peer healthcare. Washington, DC: Pew Internet & American Life Project; 2011 Jun. URL: http://www.pewinternet.org/Reports/2011/ P2PHealthcare.aspx [accessed 2011-03-22] [WebCite Cache ID 5xNN2pQQP]
32. Frost JH, Massagli MP. Social uses of personal health information within PatientsLikeMe, an online patient community: what can happen when patients have access to one another's data. J Med Internet Res 2008;10(3):e15 [FREE Full text] [doi: 10.2196/jmir.1053] [Medline: 18504244]
33. Lau AY, Kwok TM. Social features in online communities for healthcare consumers - A review. In: Ozok AA, Zaphiris P, editors. Online Communities and Social Computing: Third International Conference, OCSC 2009, Held as Part of HCI International 2009, San Diego, CA, USA, July 19-24, ... Applications, incl. Internet/Web, and HCI). Berlin, Germany: Springer; 2009:682-689.
34. Civan-Hartzler A, McDonald DW, Powell C, Skeels MM, Mukai M, Pratt W. Bringing the field into focus: user-centered design of a patient expertise locator. CHI Conf Proc 2010;2010:1675-1684. [doi: 10.1145/1753326.1753577] [Medline: 21243114]
35. Rimer BK, Lyons EJ, Ribisl KM, Bowling JM, Golin CE, Forlenza MJ, et al. How new subscribers use cancer-related online mailing lists. J Med Internet Res 2005 Jul 1;7(3):e32 [FREE Full text] [doi: 10.2196/jmir.7.3.e32] [Medline: 15998623]
36. Dasch K, Kendall J. What do newly diagnosed cancer patients discuss with survivors? Del Med J 2007 Dec;79(12):489-492. [Medline: 18240655]
37. Frost J, Massagli M. PatientsLikeMe the case for a data-centered patient community and how ALS patients use the community to inform treatment decisions and manage pulmonary health. Chron Respir Dis 2009;6(4):225-229. [Medline: 19858352]
38. Krippendorff K. Content Analysis: An Introduction to its Methodology. Thousand Oaks, CA: Sage Publications; 2004.
39. Crabtree BF, Miller WL. Doing Qualitative Research. Thousand Oaks, CA: Sage Publications; 1999.
40. Love SM, Lindsey K. Dr. Susan Love's Breast Book. Cambridge, MA: Perseus Publishing; 2000.
41. McCarthy P, Loren JA. Breast Cancer? Let Me Check My Schedule. Boulder, CO: Westview Press; 1997.
42. Willis J. The Cancer Patient's Workbook: Everything You Need to Stay Organized and Informed. New York, NY: DK ADULT; 2001.
43. Lincoln YS, Guba EG. Naturalistic Inquiry. Beverly Hills, CA: Sage Publications; 1985.
44. Lowry R. Vassar College. 2010. Concepts and Applications of Inferential Statistics URL: http://faculty.vassar.edu/lowry/webtext.html [accessed 2010-12-27] [WebCite Cache ID 5vIvn6K8B]
45. Brownlow C, O'Dell L. Ethical issues for qualitative research in on-line communities. Disability & Society 2002;17(6):685-694. [doi: 10.1080/0968759022000010452]
46. Kraut R, Olson J, Banaji M, Bruckman A, Cohen J, Couper M. Psychological research online: report of Board of Scientific Affairs' Advisory Group on the Conduct of Research on the Internet. Am Psychol 2004;59(2):105-117. [doi: 10.1037/0003-066X.59.2.105] [Medline: 14992637] (Pubitemid 38318026)
47. Eysenbach G, Till JE. Ethical issues in qualitative research on internet communities. BMJ 2001 Nov 10;323(7321):1103-1105 [FREE Full text] [Medline: 11701577] (Pubitemid 33063356)
48. Moreno MA, Fost NC, Christakis DA. Research ethics in the MySpace era. Pediatrics 2008 Jan;121(1):157-161 [FREE Full text] [doi: 10.1542/peds.2007- 3015] [Medline: 18166570]
49. Bruckman A. Teaching students to study online communities ethically. J Information Ethics 2006;15(2):82-98. [doi: 10.3172/JIE.15.2.82]
50. Finn J. An exploration of helping processes in an online self-help group focusing on issues of disability. Health Soc Work 1999 Aug;24(3):220-231. [Medline: 10505283]
51. Coulter A. After Bristol: putting patients at the centre. BMJ 2002 Mar 16;324(7338):648-651 [FREE Full text] [Medline: 11895824] (Pubitemid 34234970)
52. WEGO Health. WEGO Health.com. 2011 URL: http://www.wegohealth.com/ [accessed 2011-01-05] [WebCite Cache ID 5vW7EsPpz]
53. Ahmed OH, Sullivan SJ, Schneiders AG, McCrory P. iSupport: do social networking sites have a role to play in concussion awareness? Disabil Rehabil 2010;32(22):1877-1883. [doi: 10.3109/09638281003734409] [Medline: 20367328]
54. Bender JL, Jimenez-Marroquin MC, Jadad AR. Seeking support on facebook: a content analysis of breast cancer groups. J Med Internet Res 2011;13(1):e16 [FREE Full text] [doi: 10.2196/jmir.1560] [Medline: 21371990]
55. Newman MW, Lauterbach D, Munson SA, Resnick P, Morris ME. It's not that I don't have problems, I'm just not putting them on Facebook: challenges and opportunities in using online social networks for health. In: Proceedings. 2011 Presented at: ACM 2011 conference on Computer supported cooperative work; 2011; Hangzhou, China. [doi: 10.1145/1958824.1958876]
56. Facebook. Facebook.com. 2011 URL: http://www.facebook.com [accessed 2011-07-05] [WebCite Cache ID 5zxKhEVqj]
57. Healia Health Communities and Support Groups. healia.com. 2008 URL: http://communities.healia.com/[accessed 2011-01-04] [WebCite Cache ID 5vW7TfRVr]
58. PatientsLikeMe. patientslikeme.com. 2011 URL: http://www.patientslikeme. com/[accessed 2011-01-04] [WebCite Cache ID 5vW7a3aYr]
59. Myspace. myspace.com. 2011 URL: http://www.myspace.com/[accessed 2011-01-05] [WebCite Cache ID 5vW7hDO6y]
60. Weiss JB, Lorenzi NM. Building a shared vision for an online cancer survivorship community. AMIA Annu Symp Proc 2009 Nov 14;2009:690-694. [Medline: 20351942]
61. Skeels MM, Unruh KT, Powell C, Pratt W. Catalyzing social support for breast cancer patients. CHI Conf Proc 2010:173-182. [doi: 10.1145/1753326. 1753353] [Medline: 21654894]
62. Weiss JB, Lorenzi NM. Synthesizing community wisdom: a model for sharing cancer-related resources through social networking and collaborative partnerships. AMIA Annu Symp Proc 2008 Nov 06:793-797. [Medline: 18999298]
63. Witteman H, Chignell M, Krahn M. A recommender system for prostate cancer websites. AMIA Annu Symp Proc 2008 Nov 06;2008:1177. [Medline: 18999034]
64. Khan SA, Cohall A, Kukafka R. A tag based recommendation engine to suggest information resources in an online community for health promotion. AMIA Annu Symp Proc 2008 Nov 06;2008:1002. [Medline: 18999253]
65. Terveen LG, Hill W. Beyond recommender systems: helping people help each other. In: Carroll J, editor. Human-Domputer Interaction in the New Millennium. New York, NY: ACM Press; 2001:487-509.
66. Diigo. Diigo Inc. 2011 URL: http://www.diigo.com/[accessed 2011-01-05] [WebCite Cache ID 5vW7ltisz]
67. Cosgrove TL. Planetree health information services: public access to the health information people want. Bull Med Libr Assoc 1994 Jan;82(1):57-63. [Medline: 8136762] (Pubitemid 24027734)
68. Zeng QT, Tse T. Exploring and developing consumer health vocabularies. J Am Med Inform Assoc 2006;13(1):24-29. [doi: 10.1197/jamia.M1761] [Medline: 16221948] (Pubitemid 41828332)
69. Keselman A, Smith CA, Divita G, Kim H, Browne AC, Leroy G, et al. Consumer health concepts that do not map to the UMLS: where do they fit? J Am Med Inform Assoc 2008;15(4):496-505. [doi: 10.1197/jamia.M2599] [Medline: 18436906] (Pubitemid 351885154)
70. Smith CA, Wicks PJ. PatientsLikeMe: Consumer health vocabulary as a folksonomy. AMIA Annu Symp Proc 2008 Nov 06;2008:682-686. [Medline: 18999004]
71. Delicious. delicious.com. 2011 URL: http://www.delicious.com/[accessed 2011-07-05] [WebCite Cache ID 5zxLe9MKf]
72. Swift TL, Dieppe PA. Using expert patients' narratives as an educational resource. Patient Educ Couns 2005 Apr;57(1):115-121. [doi: 10.1016/j.pec.2004. 05.004] [Medline: 15797160] (Pubitemid 40431919)
73. Orr JE. Talking About Machines: An Ethnography of a Modern Job. Ithaca, NY: ILR Press; 1996.
74. CarePages. CarePages, Inc. 2011 URL: http://www.carepages.com/[accessed 2011-04-04] [WebCite Cache ID 5xhIHasDv]
75. Torrey C, McDonald DW. How-to web pages. Computer 2007;40(8):96-97. [doi: 10.1109/MC.2007.277]
76. Dunn J, Steginga SK, Occhiping S, Wilson K. Evaluation of a peer support program for women with breast cancer-lessons for practitioners. J Community Appl Soc Psychol 1999;9(1):13-22. [doi: 10.1002/(SICI)1099-1298(199901/02)9:13.0. CO;2-F]
77. McDonald DW, Ackerman MS. JustTalk to me: a field study of expertise location. In: CSCW '98: Proceedings of the 1998 ACM Conference on Computer Supported Cooperative Work. New York, NY: ACM; 1998:315-324. [doi: 10.1145/289444.289506]
78. McDonald DW, Ackerman MS. Expertise recommender: a flexible recommendation architecture. In: CSCW '00: Proceedings of the ACM Conference on Computer-Supported Cooperative Work. New York, NY: ACM; 2000:231-240. [doi: 10.1145/1316624.1316642] (Pubitemid 32400054)
79. Ehrlich K. Locating expertise: design issues for an expertise locator system. In: Ackerman MS, Pipek V, Wulf V, editors. Sharing Expertise: Beyond Knowledge Management. Cambridge, MA: MIT Press; 2003:137-158.
80. Ehrlich K, Lin C, Griffiths-Fisher V. Searching for experts in the enterprise: combining text and social network analysis. In: GROUP '07: Proceedings of the 2007 International ACM Conference on Supporting Group Work. New York, NY: ACM; 2007:117-126.
81. Civan A, McDonald DW, Unruh KT, Pratt W. Locating patient expertise in everyday life. GROUP ACM SIGCHI Int Conf Support Group Work 2009;2009:291-300. [Medline: 20953244]
82. van Uden-Kraan CF, Drossaert C, Taal E, Lebrun C, Drossaers-Bakker KW, Smit WM, et al. van de Laar MAFJ. Coping with somatic illnesses in online support groups: Do the feared disadvantages really occur? Computers in Human Behavior 2008;24:309-324. [doi: 10.1016/j.chb.2007.01.014]
83. Esquivel A, Meric-Bernstam F, Bernstam EV. Accuracy and self correction of information received from an internet breast cancer list: content analysis. BMJ 2006 Apr 22;332(7547):939-942 [FREE Full text] [doi: 10.1136/bmj.38753. 524201.7C] [Medline: 16513686] (Pubitemid 44365550)
84. Eysenbach G, Powell J, Englesakis M, Rizo C, Stern A. Health related virtual communities and electronic support groups: systematic review of the effects of online peer to peer interactions. BMJ 2004 May 15;328(7449):1166 [FREE Full text] [doi: 10.1136/bmj.328.7449.1166] [Medline: 15142921]
85. Kelly W, Connolly V, Bilous R, Stewart A, Nag S, Bowes D, et al. Reader beware: diabetes advice on the web. Pract Diab Int 2002;19(4):108-110. [doi: 10.1002/pdi.340]
86. Winzelberg A. The analysis of an electronic support group for individuals with eating disorders. Computers in Human Behavior 1997;13(3):393-407. [doi: 10.1016/S0747-5632(97)00016-2] (Pubitemid 127403737)
87. Hesse BW, Hansen D, Finholt T, Munson S, Kellogg W, Thomas JC. Social Participation in Health 2.0. Computer (Long Beach Calif) 2010 Nov 11;43(11):45-52. [doi: 10.1109/MC.2010.326] [Medline: 21379365]