Distributed knowledge in an online patient support community: Authority and discovery

Journal of the Association for Information Science and Technology

Volumn 65, Issue 7, 2014, Pages 1319-1334

  Kazmer, Michelle M ^a   Lustria, Mia Liza A ^a   Cortese, Juliann ^a   Burnett, Gary ^a   Kim, Ji Hyun ^a   Ma, Jinxuan ^a   Frost, Jeana ^b  

^a FLORIDA STATE UNIVERSITY   (United States)

^b VU UNIVERSITY AMSTERDAM   (Netherlands)

Author keywords

[No Author keywords available]

Indexed keywords

KNOWLEDGE MANAGEMENT; NEURODEGENERATIVE DISEASES; NEURONS; SOCIAL NETWORKING (ONLINE);

AMYOTROPHIC LATERAL SCLEROSIS; DISTRIBUTED KNOWLEDGE; HEALTH CARE PROFESSIONALS; MEDICAL LITERATURES; QUALITATIVE ANALYSIS; SOURCES OF INFORMATIONS; SUPPORTING KNOWLEDGE; THREADED DISCUSSIONS;

MEDICAL EDUCATION;

EID: 84903982993     PISSN: 23301635     EISSN: 23301643     Source Type: Journal    
DOI: 10.1002/asi.23064     Document Type: Review

References (62)

1. Ahuvia, A. (2001). Traditional, interpretive, and reception based content analyses: Improving the ability of content analysis to address issues of pragmatic and theoretical concern. Social Indicators Research, 54, 139-172.
2. Andronis, C., Sharma, A., Virvilis, V., Deftereos, S., & Persidis, A. (2011). Literature mining, ontologies and information visualization for drug repurposing. Briefings in Bioinformatics, 12, 357-368.
3. Baker, N.C., & Hemminger, B.M. (2010). Mining connections between chemicals, proteins, and diseases extracted from Medline annotations. Journal of Biomedical Informatics, 43, 510-519.
4. Beaudoin, C.E., & Tao, C.-C. (2007). Benefiting from social capital in online support groups: An empirical study of cancer patients. Cyber-Psychology and Behavior, 10, 587-590. (Pubitemid 47328674)
5. Bedlack, R.S., Wicks, P., Heywood, J., & Kasarskis, E. (2010). Modifiable barriers to enrollment in American ALS research studies. Amyotrophic Lateral Sclerosis, 11 (6), 502-507.
6. Berkman, L. (1995). The role of social relations in health promotion. Psychosomatic Medicine, 57, 245-254.
7. Bradley, E.H., Curry, L.A., & Devers, K.J. (2007). Qualitative data analysis for health services research: Developing taxonomy, themes, and theory. HSR: Health Services Research, 42, 1758-1772. (Pubitemid 47024850)
8. Brody, B.D., & Haut, S.R. (2009). Ending the doctor-patient relationship in neurology practice. Neurologist, 15, 277-281.
9. Brownstein, C.A., Brownstein, J.S., Williams D.S. III, Wicks, P., & Heywood, J.A. (2009). The power of social networking in medicine. Nature Biotechnology, 27, 888-890.
10. Charmaz, K. (2006). Constructing grounded theory: A practical guide through qualitative analysis. Thousand Oaks, CA: Sage.
11. Chi, E.H., Pirolli, P., & Lam, S.K. (2007). Aspects of augmented social cognition: Social information foraging and social search. In D. Schuler (Ed.), Online Communities and Social Computing: Second International Conference (pp. 60-69). New York: Springer.
12. Cohen, S.D., Sharma, T., Acquaviva, K., Peterson, R.A., Patel, S.S., (2007). Social support and chronic kidney disease: An update. Advances in Chronic Kidney Disease, 14 (4), 335-344. (Pubitemid 47451830)
13. Coulson, N.S., Buchanan, H., & Aubeeluck, A. (2007). Social support in cyberspace: A content analysis of communication within a Huntington's disease online support group. Patient Education and Counseling, 68 (2), 173-178. (Pubitemid 47375026)
14. Coyne, I.T. (1997). Sampling in qualitative research: Purposeful and theoretical sampling; merging or clear boundaries? Journal of Advanced Nursing, 26, 623-630.
15. Cramton, C.D. (2001). The mutual knowledge problem and its consequences for dispersed collaboration. Organization Science, 12, 346-371.
16. Cummings, J.N. (2011). Geography is alive and well in virtual teams. Communications of the ACM, 54 (8), 24-26.
17. Dang, Y., Zhang, Y., Chen, H., Hu, P.J.-H., Brown, S.A., &Larson, C. (2009). Arizona Literature Mapper: An integrated approach to monitor and analyze global bioterrorism research literature. Journal of the American Society for Information Science and Technology, 60, 1466-1485.
18. Davison, K.P., Pennebaker, J.W., & Dickerson, S.S. (2000). Who talks? The social psychology of illness support groups. American Psychologist, 55 (2), 205-217.
19. Dickey, M.H., Burnett, G., Chudoba, K.M., &Kazmer, M.M. (2007).Doyou read me?: Perspective making and perspective taking in chat communications. Journal of the Association for Information Systems, 8, 47-70.
20. Fagin, R., Halpern, J.Y., Moses, Y., & Vardi, M.Y. (2003). Reasoning about knowledge. Cambridge, MA: MIT Press.
21. Frost, J., Okun, S., Vaughan, T., Heywood, J., & Wicks, P. (2011). Patientreported outcomes as a source of evidence in off-label prescribing: Analysis of data from PatientsLikeMe. Journal of Medical Internet Research, 13 (1), e6.
22. Gordon, M.D., & Lindsay, R.K. (1996). Toward discovery support systems: A replication, re-examination, and extension of Swanson's work on literature-based discovery of a connection between Raynaud's and fish oil. Journal of the American Society for Information Science and Technology, 47, 116-128. (Pubitemid 126607671)
23. Griffith, T.L., Sawyer, J.E., & Neale, M.A. (2003). Virtualness and knowledge in teams: Managing the love triangle of organizations, individuals, and information technology. MIS Quarterly, 27, 265-287.
24. Griffiths, K.M., Calear, A.L., Banfield, M., & Tam, A. (2009). Systematic review on Internet Support Groups (ISGs) and depression (2): What is known about depression ISGs? Journal of Medical Internet Research, 11 (3), e41.
25. Halpern, J.Y., & Moses, Y. (1990). Knowledge and common knowledge in a distributed environment. Journal of the ACM, 37, 549-587.
26. Hartzler, A., & Pratt, W. (2011). Managing the personal side of health: How patient expertise differs from the expertise of clinicians. Journal of Medical Internet Research, 13 (3), e62.
27. Haythornthwaite, C. (2006). Articulating divides in distributed knowledge practice. Information, Communication & Society, 9, 761-780.
28. Hoadley, C.M., & Kilner, P.G. (2005). Using technology to transform communities of practice into knowledge-building communities. SIGGroup Bulletin, 25 (1), 31-40.
29. Israel, B.A. (1985). Social networks and social support: Implications for natural helper and community level interventions. Health Education & Behavior, 12, 65-80.
30. Jordan, B. (1997). Authoritative knowledge and its construction. In R. Davis-Floyd & C. Sargent (Eds.), Childbirth and authoritative knowledge: Cross-cultural perspectives (pp. 55-79). Berkeley, CA: University of California Press.
31. Kingfisher, C.P., &Millard, A.V. (1998). "Milk makes me sick but my body needs it": Conflict and contradiction in the establishment of authoritative knowledge. Medical Anthropology Quarterly, 12, 447-466.
32. Koike, A., & Takagi, T. (2007). Knowledge discovery based on an implicit and explicit conceptual network. Journal of the American Society for Information Science and Technology, 58, 51-65. (Pubitemid 46051783)
33. Lasker, J.N., Sogolow, E.D., & Sharim, R.R. (2005). 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 (1), e10.
34. Leimeister, J.M., Schweizer, K., Leimeister, S., & Kromar, H. (2008). Do virtual communities matter for the social support of patients?: Antecedents and effects of virtual relationships in online communities. Infomation Technology & People, 21, 350-374.
35. McCoyd, J.L.M. (2010). Authoritative knowledge, the technological imperative and women's responses to prenatal diagnostic techniques. Culture Medicine and Psychiatry, 34, 590-614.
36. Messori, A., Trippoli, S., Becagli, P., & Zaccara, G. (1999). Cost effectiveness of riluzole in amyotrophic lateral sclerosis. Italian Cooperative Group for the Study of Meta-Analysis and the Osservatorio SIFO sui Farmaci. Pharmacoeconomics, 16 (2), 153-163.
37. Miller, R.G., Jackson, C.E., Kasarskis, E.J., England, J.D., Forshew, D., Johnston, W., (2009). Practice parameter update: the care of the patient with amyotrophic lateral sclerosis: Multidisciplinary care, symptom management, and cognitive/behavioral impairment (an evidence-based review): Report of the Quality Standards Subcommittee of the American Academy of Neurology. Neurology, 73 (15), 1227-1233.
38. Miller, R.G., Mitchell, J.D., & Moore, D.H. (2012). Riluzole for amyotrophic lateral sclerosis (ALS)/motor neuron disease (MND). Cochrane Database Syst Rev, 3, CD001447.
39. Mo, P.K.H., & Coulson, N.S. (2008). Exploring the communication of social support within virtual communities: A content analysis of messages posted to an online HIV/AIDS support group. CyberPsychology and Behavior, 11 (3), 371-374. (Pubitemid 351809519)
40. O'Leary, M.B., & Cummings, J.N. (2007). The spatial, temporal, and configurational characteristics of geographic dispersion in teams. MIS Quarterly, 31, 433-452. (Pubitemid 47359819)
41. Oliphant, T. (2009). "I am making my decision on the basis of my experience": Constructing authoritative knowledge about treatments for depression. Canadian Journal of Information and Library Science, 33, 215-232.
42. Olson, G.M., & Olson, J.S. (2000). Distance matters. Human-Computer Interaction, 15, 139-178. (Pubitemid 32251322)
43. Patton, M.Q. (2002). Qualitative research and evaluation methods (3rd ed.). Thousand Oaks, CA: Sage.
44. Perkins, E. (2001). Johns Hopkins' tragedy: Could librarians have prevented a death? Information Today NewsBreaks. Retrieved from http://newsbreaks.infotoday.com/nbreader.asp?ArticleID=17534
45. Pirolli, P. (2009). An elementary social information foraging model. In CHI 2009: Digital life, new world. Conference proceedings and extended abstracts: The 27th Annual CHI Conference on Human Factors in Computing Systems, April 4-9 in Boston (pp. 605-614). New York: ACM.
46. Schrire, S. (2006). Knowledge building in asynchronous discussion groups: Going beyond quantitative analysis. Computers & Education, 46, 49-70.
47. Shigaki, C.L., Smarr, K.L., Yang Gong, Donovan-Hanson, K., Siva, C., Johnson, R.A., (2008). Social interactions in an online selfmanagement program for rheumatoid arthritis. Chronic Illness, 4 (4), 239-246.
48. Siddique, T., & Ajroud-Driss, S. (2011). Familial amyotrophic lateral sclerosis, a historical perspective. Acta Myologica, 30, 117-120.
49. Steinke, I. (2004). Quality criteria in qualitative research. In U. Flick, E. v. Kardorff, & I. Steinke (Eds.), A companion to qualitative research (pp. 184-190). Thousand Oaks, CA: Sage.
50. Strauss, A., & Corbin, J. (1998). Basics of qualitative research: Techniques and procedures for developing grounded theory (2nd ed.). Thousand Oaks, CA: Sage.
51. Suchman, L., & Jordan, B. (1997). Computerization and women's knowledge. In P.E. Agre & D. Schuler (Eds.), Reinventing technology, rediscovering community: Critical explorations of computing as a social practice (pp. 97-105). Greenwich, CT: Ablex.
52. Swanson, D.R. (1986). Undiscovered public knowledge. Library Quarterly, 56, 103-118.
53. Turner, M.R., Wicks, P., Brownstein, C.A., Massagli, M.P., Toronjo, M., Talbot, K., (2011). Concordance between site of onset and limb dominance in amyotrophic lateral sclerosis. Journal of Neurology, Neurosurgery, & Psychiatry with Practical Neurology, 82, 853-854.
54. Wicks, P., Abrahams, S., Masi, D., Hejda-Forde, S., Leigh, P.N., & Goldstein, L.H. (2007). Prevalence of depression in a 12-month consecutive sample of patients with ALS. European Journal of Neurology, 14 (9), 993-1001. (Pubitemid 47300772)
55. Wicks, P., & Frost, J. (2008). ALS patients request more information about cognitive symptoms. European Journal of Neurology, 15 (5), 497-500. (Pubitemid 351499196)
56. Wicks, P., Massagli, M., Frost, J., Brownstein, C., Okun, S., Vaughan, T., (2010). Sharing health data for better outcomes on PatientsLikeMe. Journal of Medical Internet Research, 12 (2), e19.
57. Wicks, P., Massagli, M.P., Wolf, C., & Heywood, J. (2009). Measuring function in advanced ALS: Validation of ALSFRS-EX extension items. European Journal of Neurology, 16 (3), 353-359.
58. Wicks, P., Vaughan, T.E., Massagli, M.P., & Heywood, J. (2011). Accelerated clinical discovery using self-reported patient data collected online and a patient-matching algorithm. Nature Biotechnology, 29, 411-414.
59. Wijesekera, L.C., & Leigh, P.N. (2009). Amyotrophic lateral sclerosis. Orphanet Journal of Rare Diseases, 4.
60. Wohn, D.Y., Lampe, C., Vitak, J., & Ellison, N.B. (2011). Coordinating the ordinary: Social information uses of Facebook by adults. In iConference '11: Proceedings of the 2011 iConference (pp. 340-347). New York: ACM.
61. Wright, K.B., & Bell, S.B. (2003). Health-related support groups on the Internet: Linking empirical findings to social support and computermediated communication theory. Journal of Health Psychology, 8 (1), 39-54. (Pubitemid 36142815)
62. Wright, D., Nyland, A., Carnevale, F., & Gros, C. (2010). Response to comment: Broken promises and the bad patient. Nursing Ethics, 17, 668-671.