Internet use frequency and patient-centered care: Measuring patient preferences for participation using the health information wants questionnaire

Journal of Medical Internet Research

Volumn 15, Issue 7, 2013, Pages

  Xie, Bo ^a   Wang, Mo ^b   Feldman, Robert ^c   Zhou, Le ^b  

^a UNIVERSITY OF TEXAS AT AUSTIN   (United States)

^b UNIVERSITY OF FLORIDA   (United States)

^c UNIVERSITY OF MARYLAND   (United States)

Author keywords

Internet; Patient participation; Patient preference; Patient centered care; Shared decision making

Indexed keywords

ADOLESCENT; ADULT; FEMALE; HUMAN; INTERNET; MALE; PATIENT CARE; PATIENT EDUCATION; PATIENT PARTICIPATION; PATIENT PREFERENCE; PROCEDURES; QUESTIONNAIRE; UTILIZATION; YOUNG ADULT; ARTICLE; METHODOLOGY; SHARED DECISION-MAKING; UTILIZATION REVIEW;

ADOLESCENT; ADULT; FEMALE; HUMANS; INTERNET; MALE; PATIENT EDUCATION AS TOPIC; PATIENT PARTICIPATION; PATIENT PREFERENCE; PATIENT-CENTERED CARE; QUESTIONNAIRES; YOUNG ADULT;

INTERNET; PATIENT PARTICIPATION; PATIENT PREFERENCE; PATIENT-CENTERED CARE; SHARED DECISION-MAKING;

EID: 84883400599     PISSN: None     EISSN: 14388871     Source Type: Journal    
DOI: 10.2196/jmir.2615     Document Type: Article

References (79)

1. Berg JW, Appelbaum PS, Lidz CW, Parker LS. Informed consent: legal theory and clinical practice. Oxford: Oxford University Press; 2001.
2. Sheridan SL, Harris RP, Woolf SH, Shared Decision-Making Workgroup of the U.S. Preventive Services Task Force. Shared decision making about screening and chemoprevention. a suggested approach from the U.S. Preventive Services Task Force. Am J Prev Med 2004 Jan;26(1):56-66. [Medline: 14700714]
3. Committee on Quality of Health Care in America, Institute of Medicine. Crossing the quality chasm: a new health system for the 21st century. Washington, D.C: National Academy Press; 2001.
4. Lee YY, Lin JL. Do patient autonomy preferences matter? Linking patient-centered care to patient-physician relationships and health outcomes. Soc Sci Med 2010 Nov;71(10):1811-1818. [doi: 10.1016/j.socscimed.2010.08.008] [Medline: 20933316]
5. Bertakis KD, Azari R. Patient-centered care is associated with decreased health care utilization. J Am Board Fam Med 2011;24(3):229-239 [FREE Full text] [doi:10.3122/jabfm.2011.03.100170] [Medline: 21551394]
6. Veroff D, Marr A, Wennberg DE. Enhanced support for shared decision making reduced costs of care for patients with preference-sensitive conditions. Health Aff (Millwood) 2013 Feb;32(2):285-293. [doi: 10.1377/hlthaff.2011.0941] [Medline: 23381521]
7. Parsi K, Chambers CJ, Armstrong AW. Cost-effectiveness analysis of a patient-centered care model for management of psoriasis. J Am Acad Dermatol 2012 Apr;66(4):563-570. [doi: 10.1016/j.jaad.2011.02.022] [Medline: 21835497]
8. Ballard-Reisch DS. A Model of Participative Decision Making for Physician-Patient Interaction. Health Communication 1990 Apr;2(2):91-104. [doi:10.1207/s15327027hc0202-3]
9. McNutt RA. Shared medical decision making: problems, process, progress. JAMA 2004 Nov 24;292(20):2516-2518. [doi:10.1001/jama.292.20.2516] [Medline: 15562133]
10. Brody DS. The patient's role in clinical decision-making. Ann Intern Med 1980 Nov;93(5):718-722. [Medline: 7212484]
11. Charles C, Gafni A, Whelan T. Shared decision-making in the medical encounter: what does it mean? (or it takes at least two to tango). Soc Sci Med 1997 Mar;44(5):681-692. [Medline: 9032835]
12. Charles C, Gafni A, Whelan T. Decision-making in the physician-patient encounter: revisiting the shared treatment decision-making model. Soc Sci Med 1999 Sep;49(5):651-661. [Medline: 10452420]
13. Braddock CH, Edwards KA, Hasenberg NM, Laidley TL, Levinson W. Informed decision making in outpatient practice: time to get back to basics. JAMA 1999;282(24):2313-2320. [Medline: 10612318]
14. Politi MC, Wolin KY, Légaré F. Implementing clinical practice guidelines about health promotion and disease prevention through shared decision making. J Gen Intern Med 2013 Jun;28(6):838-844. [doi: 10.1007/s11606-012-2321-0] [Medline: 23307397]
15. Entwistle VA, Watt IS. Patient involvement in treatment decision-making: the case for a broader conceptual framework. Patient Educ Couns 2006 Nov;63(3):268-278. [doi: 10.1016/j.pec.2006.05.002] [Medline: 16875797]
16. Ende J, Kazis L, Ash A, Moskowitz MA. Measuring patients' desire for autonomy: decision making and information-seeking preferences among medical patients. J Gen Intern Med 1989;4(1):23-30. [Medline: 2644407]
17. Xie B, Wang M, Feldman R. Preferences for health information and decision-making: development of the Health Information Wants questionnaire. In: Proceedings of the 2011 iConference. New York, NY: ACM; 2011 Presented at: iConference; Feb. 8-11, 2011; Seattle, Washington p. 237-280. [doi: 10.1145/1940761.1940799]
18. Krantz DS, Baum A, Wideman Mv. Assessment of Preferences for self-treatment and information in health care. J Pers Soc Psychol 1980 Nov;39(5):977-990. [Medline: 7441487]
19. Cassileth BR, Zupkis RV, Sutton-Smith K, March V. Information and participation preferences among cancer patients. Ann Intern Med 1980 Jun;92(6):832-836. [Medline: 7387025]
20. Galloway SC, Graydon JE. Uncertainty, symptom distress, and information needs after surgery for cancer of the colon. Cancer Nurs 1996 Apr;19(2):112-117. [Medline: 8635164]
21. Galloway S, Graydon J, Harrison D, Evans-Boyden B, Palmer-Wickham S, Burlein-Hall S, et al. Informational needs of women with a recent diagnosis of breast cancer: development and initial testing of a tool. J Adv Nurs 1997 Jun;25(6):1175-1183. [Medline: 9181414]
22. Chalmers KI, Luker KA, Leinster SJ, Ellis I, Booth K. Information and support needs of women with primary relatives with breast cancer: development of the Information and Support Needs Questionnaire. J Adv Nurs 2001 Aug;35(4):497-507. [Medline: 11529948]
23. Beisecker AE, Beisecker TD. Patient information-seeking behaviors when communicating with doctors. Med Care 1990 Jan;28(1):19-28. [Medline: 2296214]
24. Luker KA, Beaver K, Leinster SJ, Owens RG, Degner LF, Sloan JA. The information needs of women newly diagnosed with breast cancer. J Adv Nurs 1995 Jul;22(1):134-141. [Medline: 7560521]
25. Degner LF, Sloan JA. Decision making during serious illness: what role do patients really want to play? J Clin Epidemiol 1992 Sep;45(9):941-950. [Medline: 1432023]
26. Baker L, Wagner TH, Singer S, Bundorf MK. Use of the Internet and e-mail for health care information: results from a national survey. JAMA 2003 May 14;289(18):2400-2406. [doi: 10.1001/jama.289.18.2400] [Medline: 12746364]
27. Fox S. 2006 Online Health Search.: Pew Internet Research URL: http://www.pewinternet.org/~/media/Files/Reports/2006/PIP-Online-Health-2006. pdf.pdf [accessed 2013-02-17] [WebCite Cache ID 6EVzd44g1]
28. Fox S, Raine L. Vital decisions: how Internet users decide what information to trust when they or their loved ones are sick. Plus a guide from the Medical Library Association about smart health-search strategies and good Web sites. 2002. URL: http://www.pewinternet.org/~/media//Files/Reports/2002/ PIP-Vital-Decisions-May2002.pdf.pdf [accessed 2013-02-17] [WebCite Cache ID 6EW1JiG7H]
29. Fox S. Health Information Online.: Pew Internet Research; 2005. URL: http://www.pewinternet.org/pdfs/PIP-Healthtopics-May05.pdf [accessed 2013-02-17] [WebCite Cache ID 6EW2x0kjg]
30. Fox S, Raine L. The online health care revolution: how the Web helps Americans take better care of themselves. 2000. URL: http://www.pewinternet.org/ ~/media//Files/Reports/2000/PIP-Health-Report.pdf.pdf [accessed 2013-02-18] [WebCiteCache ID 6EW33MwcI]
31. Dickerson S, Reinhart AM, Feeley TH, Bidani R, Rich E, Garg VK, et al. Patient Internet use for health information at three urban primary care clinics. J Am Med Inform Assoc 2004;11(6):499-504 [FREE Full text] [doi: 10.1197/jamia.M1460] [Medline: 15298993]
32. 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]
33. Kaiser Family Foundation. e-Health and the elderly: how seniors use the Internet for health information. 2005. URL: http://www.kff.org/entmedia/upload/ e-Health-and-the-Elderly-How-Seniors-Use-the-Internet-for-Health-Information- Key-Findings-From-a-National-Survey-of-Older-Americans-Survey-Report.pdf [accessed 2013-02-18] [WebCite Cache ID 6EW3J0BOp]
34. Fox S. E-patients with a disability or chronic disease. Washington, DC: PEW Internet & Life Project; 2007. URL: http://www.pewinternet.org/~/media// Files/Reports/2007/EPatients-Chronic-Conditions-2007.pdf.pdf [accessed 2013-02-18][WebCite Cache ID 6EW3NyUk5]
35. Greaves F, Pape UJ, King D, Darzi A, Majeed A, Wachter RM, et al. Associations between Internet-based patient ratings and conventional surveys of patient experience in the English NHS: an observational study. BMJ Qual Saf 2012 Jul;21(7):600-605. [doi: 10.1136/bmjqs-2012-000906] [Medline: 22523318]
36. Hu X, Bell RA, Kravitz RL, Orrange S. The prepared patient: information seeking of online support group members before their medical appointments. J Health Commun 2012;17(8):960-978. [doi: 10.1080/10810730.2011.650828] [Medline: 22574697]
37. Groves ND, Humphreys HW, Williams AJ, Jones A. Effect of informational internet web pages on patients' decision-making: randomised controlled trial regarding choice of spinal or general anaesthesia for orthopaedic surgery. Anaesthesia 2010 Mar;65(3):277-282. [Medline: 20336817]
38. Kassan EC, Williams RM, Kelly SP, Barry SA, Penek S, Fishman MB, et al. Men's use of an Internet-based decision aid for prostate cancer screening. J Health Commun 2012;17(6):677-697. [doi: 10.1080/10810730.2011.579688] [Medline: 21919646]
39. Ziebland S, Chapple A, Dumelow C, Evans J, Prinjha S, Rozmovits L. How the internet affects patients' experience of cancer: a qualitative study. BMJ 2004 Mar 6;328(7439):564 [FREE Full text] [doi: 10.1136/bmj.328.7439.564] [Medline: 15001506]
40. Xie B. Older adults' health information wants in the internet age: implications for patient-provider relationships. J Health Commun 2009 Sep;14(6):510-524. [doi: 10.1080/10810730903089614] [Medline: 19731124]
41. Xie B, Wang M, Feldman R, Zhou L. Health information and decision-making preferences in the Internet age: a pilot study using the Health Information Wants (HIW) Questionnaire. In: Proceedings of the 1st ACM International Health Informatics Symposium. New York, NY: ACM; 2010 Presented at: 1st ACM International Health Informatics Symposium; Nov. 11-12, 2010; Arlington, VA p. 610-619. [doi:10.1145/1882992.1883090]
42. Xie B, Wang M, Feldman R, Zhou L. Exploring older and younger adults' preferences for health information and participation in decision making using the Health Information Wants Questionnaire (HIWQ). Health Expect 2012 Jul 11:-. [doi: 1111/j.1369-7625.2012.00804.x] [Medline: 22783800]
43. Zickuhr K, Madden A. Older adults and Internet use.: Pew Internet Research; 2012. URL: http://www.pewinternet.org/~/media//Files/Reports/2012/PIP- Older-adults-and-internet-use.pdf [accessed 2013-02-18] [WebCite Cache ID6EW44YZMW]
44. Levinson W, Kao A, Kuby A, Thisted RA. Not all patients want to participate in decision making. A national study of public preferences. J Gen Intern Med 2005 Jun;20(6):531-535 [FREE Full text] [doi: 10.1111/j.1525-1497. 2005.04101.x][Medline: 15987329]
45. Pinquart M, Duberstein PR. Information needs and decision-making processes in older cancer patients. Crit Rev Oncol Hematol 2004 Jul;51(1):69-80. [doi: 10.1016/j.critrevonc.2004.04.002] [Medline: 15207255]
46. Benbassat J, Pilpel D, Tidhar M. Patients' preferences for participation in clinical decision making: a review of published surveys. Behav Med 1998;24(2):81-88. [doi: 10.1080/08964289809596384] [Medline: 9695899]
47. Hill SA, Laugharne R. Decision making and information seeking preferences among psychiatric patients. J Ment Health 2006 Jan;15(1):75-84. [doi: 10.1080/09638230500512250]
48. Flynn KE, Smith MA. Personality and health care decision-making style. J Gerontol B Psychol Sci Soc Sci 2007 Sep;62(5):P261-P267 [FREE Full text] [Medline: 17906167]
49. Auerbach SM, Pegg PO. Appraisal of Desire for Control over Healthcare: Structure, Stability, and Relation to Health Locus of Control and to the 'Big Five' Personality Traits. J Health Psychol 2002 Jul;7(4):393-408. [doi: 10.1177/1359105302007004328] [Medline: 22112750]
50. Braman AC, Gomez RG. Patient personality predicts preference for relationships with doctors. Personality and Individual Differences 2004 Sep;37(4):815-826. [doi: 10.1016/j.paid.2003.10.009]
51. Bagley-Burnett C. Measuring information-seeking behaviorsdecision-making preferences. In: Frank-Stromborg M, Olsen SJ, editors. Instruments for Clinical Health-Care Research 3rd ed. Sudbury, MA: Jones and Bartlett Publishers; 2004:455-471.
52. Say R, Murtagh M, Thomson R. Patients' preference for involvement in medical decision making: a narrative review. Patient Educ Couns 2006 Feb;60(2):102-114. [doi: 10.1016/j.pec.2005.02.003] [Medline: 16442453]
53. Davis RE, Jacklin R, Sevdalis N, Vincent CA. Patient involvement in patient safety: what factors influence patient participation and engagement? Health Expect 2007 Sep;10(3):259-267. [doi: 10.1111/j.1369-7625.2007.00450.x] [Medline:17678514]
54. Jung HP, Baerveldt C, Olesen F, Grol R, Wensing M. Patient characteristics as predictors of primary health care preferences: a systematic literature analysis. Health Expect 2003 Jun;6(2):160-181. [Medline: 12752744]
55. Chewning B, Bylund CL, Shah B, Arora NK, Gueguen JA, Makoul G. Patient preferences for shared decisions: a systematic review. Patient Educ Couns 2012 Jan;86(1):9-18. [doi: 10.1016/j.pec.2011.02.004] [Medline: 21474265]
56. Juster F, Suzman R. The health and retirement study: an overview. J Hum Resour 1995;30(Suppl):7-56.
57. Raudenbush SW, Bryk AS. Hierarchical linear models: Applications and data analysis methods, 2nd ed. Thousand Oaks, CA: Sage; 2002.
58. Blumenthal D. Doctors in a wired world: can professionalism survive connectivity? Milbank Q 2002;80(3):525-46, iv [FREE Full text] [Medline: 12233248]
59. Gerber BS, Eiser AR. The patient physician relationship in the Internet age: future prospects and the research agenda. J Med Internet Res 2001;3(2):E15 [FREE Full text] [doi: 10.2196/jmir.3.2.e15] [Medline: 11720957]
60. Wald HS, Dube CE, Anthony DC. Untangling the Web-the impact of Internet use on health care and the physician-patient relationship. Patient Educ Couns 2007 Nov;68(3):218-224. [doi: 10.1016/j.pec.2007.05.016] [Medline: 17920226]
61. Rozenblum R, Bates DW. Patient-centred healthcare, social media and the internet: the perfect storm? BMJ Qual Saf 2013 Mar;22(3):183-186. [doi: 10.1136/bmjqs-2012-001744] [Medline: 23378660]
62. Starr P. The social transformation of American medicine. New York: Basic Books, Inc., Publishers; 1982
63. Fox S, Duggan M. Health Online 2013.: Pew Internet Research URL: http://pewinternet.org/~/media//Files/Reports/PIP-HealthOnline.pdf [accessed 2013-02-17] [WebCite Cache ID 6EVyj3wus]
64. Lima-Pereira P, Bermúdez-Tamayo C, Jasienska G. Use of the Internet as a source of health information amongst participants of antenatal classes. J Clin Nurs 2012 Feb;21(3-4):322-330. [doi: 10.1111/j.1365-2702.2011. 03910.x] [Medline: 22093043]
65. Campbell RJ. Consumer Health, Patient Education, and The Internet. Internet Journal of Health 2001;2(2):-. [doi:10.5580/289e#sthash.SM9hihV8.dpuf]
66. Hardt JH, Hollis-Sawyer L. Older Adults Seeking Healthcare Information on the Internet. Educational Gerontology 2007 Jun 13;33(7):561-572. [doi: 10.1080/03601270701364628]
67. Greene JA, Choudhry NK, Kilabuk E, Shrank WH. Online social networking by patients with diabetes: a qualitative evaluation of communication with Facebook. J Gen Intern Med 2011 Mar;26(3):287-292 [FREE Full text] [doi:10.1007/s11606-010-1526-3] [Medline: 20945113]
68. Greaves F, Millett C. Consistently increasing numbers of online ratings of healthcare in England. J Med Internet Res 2012;14(3):e94 [FREE Full text] [doi: 10.2196/jmir.2157] [Medline: 22742977]
69. Gao GG, McCullough JS, Agarwal R, Jha AK. A changing landscape of physician quality reporting: analysis of patients' online ratings of their physicians over a 5-year period. J Med Internet Res 2012 Feb;14(1):e38 [FREE Full text] [doi:10.2196/jmir.2003] [Medline: 22366336]
70. Bardach NS, Asteria-Peñaloza R, Boscardin WJ, Dudley RA. The relationship between commercial website ratings and traditional hospital performance measures in the USA. BMJ Qual Saf 2013 Mar;22(3):194-202. [doi: 10.1136/bmjqs-2012-001360] [Medline: 23178860]
71. Greaves F, Ramirez-Cano D, Millett C, Darzi A, Donaldson L. Harnessing the cloud of patient experience: using social media to detect poor quality healthcare. BMJ Qual Saf 2013 Mar;22(3):251-255. [doi: 10.1136/bmjqs-2012- 001527] [Medline: 23349387]
72. Kaplan RM, Frosch DL. Decision making in medicine and health care. Annu Rev Clin Psychol 2005;1:525-556. [doi: 10.1146/annurev.clinpsy.1.102803.144118] [Medline: 17716098]
73. Gaston CM, Mitchell G. Information giving and decision-making in patients with advanced cancer: a systematic review. Soc Sci Med 2005 Nov;61(10):2252-2264. [doi: 10.1016/j.socscimed.2005.04.015] [Medline: 15922501]
74. Deber RB, Kraetschmer N, Irvine J. What role do patients wish to play in treatment decision making? Arch Intern Med 1996 Jul 8;156(13):1414-1420. [Medline: 8678709]
75. Strull WM, Lo B, Charles G. Do patients want to participate in medical decision making? JAMA 1984 Dec 7;252(21):2990-2994. [Medline: 6502860]
76. Stevenson LW, Hellkamp AS, Leier CV, Sopko G, Koelling T, Warnica JW, et al. Changing preferences for survival after hospitalization with advanced heart failure. J Am Coll Cardiol 2008 Nov 18;52(21):1702-1708 [FREE Full text] [doi: 10.1016/j.jacc.2008.08.028] [Medline: 19007689]
77. Bowling A, Reeves BC, Rowe G. Do treatment preferences for patients with angina change? An 18-month follow-up study. Health Expect 2012 Dec;15(4):351-359 [FREE Full text] [doi: 10.1111/j.1369-7625.2011.00680.x] [Medline: 21726362]
78. Pardon K, Deschepper R, Vander Stichele R, Bernheim JL, Mortier F, Bossuyt N, EOLIC-consortium. Changing preferences for information and participation in the last phase of life: a longitudinal study among newly diagnosed advanced lung cancer patients. Support Care Cancer 2012 Oct;20(10):2473-2482. [doi: 10.1007/s00520-011-1369-4] [Medline: 22246616]
79. Loukanova S, Molnar R, Bridges JF. Promoting patient empowerment in the healthcare system: highlighting the need for patient-centered drug policy. Expert Rev Pharmacoecon Outcomes Res 2007 Jun;7(3):281-289. [doi:10.1586/ 14737167.7.3.281] [Medline: 20528314]