"You get reminded you're a sick person": Personal data tracking and patients with multiple chronic conditions

Journal of Medical Internet Research

Volumn 17, Issue 8, 2015, Pages

  Ancker, Jessica S ^a   Witteman, Holly O ^b,c   Hafeez, Baria ^a   Provencher, Thierry ^b   Van De Graaf, Mary ^a   Wei, Esther ^a  

^a WEILL CORNELL MEDICAL COLLEGE   (United States)

^b UNIVERSITÉ LAVAL   (Canada)

^c LAVAL UNIVERSITY   (Canada)

Author keywords

Attitudes; Chronic disease; Consumer health information; Health knowledge; Medical informatics; Practices; Self care

Indexed keywords

ADULT; AGED; ATTITUDE TO HEALTH; CHRONIC DISEASE; CHRONIC PAIN; COMORBIDITY; CONSUMER HEALTH INFORMATION; DEPRESSIVE DISORDER; DIABETES MELLITUS, TYPE 2; FEMALE; HEART DISEASES; HUMAN; HYPERTENSION; MALE; MEDICAL INFORMATICS; MEDICAL RECORD; MIDDLE AGED; PSYCHOLOGY; QUALITATIVE RESEARCH; SELF CARE; VERY ELDERLY;

ADULT; AGED; AGED, 80 AND OVER; CHRONIC DISEASE; CHRONIC PAIN; COMORBIDITY; CONSUMER HEALTH INFORMATION; DEPRESSIVE DISORDER; DIABETES MELLITUS, TYPE 2; FEMALE; HEALTH KNOWLEDGE, ATTITUDES, PRACTICE; HEALTH RECORDS, PERSONAL; HEART DISEASES; HUMANS; HYPERTENSION; MALE; MEDICAL INFORMATICS; MIDDLE AGED; QUALITATIVE RESEARCH; SELF CARE;

EID: 84940642207     PISSN: None     EISSN: 14388871     Source Type: Journal    
DOI: 10.2196/jmir.4209     Document Type: Article

References (55)

1. Swan M. Emerging patient-driven health care models: an examination of health social networks, consumer personalized medicine and quantified self-tracking. Int J Environ Res Public Health 2009 Feb;6(2):492-525 [FREE Full text] [doi: 10.3390/ijerph6020492] [Medline: 19440396]
2. Ancker JS, Barrón Y, Rockoff ML, Hauser D, Pichardo M, Szerencsy A, et al. Use of an electronic patient portal among disadvantaged populations. J Gen Intern Med 2011 Oct;26(10):1117-1123 [FREE Full text] [doi: 10.1007/s11606-011-1749-y] [Medline: 21647748]
3. Phelps RG, Taylor J, Simpson K, Samuel J, Turner AN. Patients' continuing use of an online health record: a quantitative evaluation of 14,000 patient years of access data. J Med Internet Res 2014;16(10):e241 [FREE Full text] [doi: 10.2196/jmir.3371] [Medline: 25344621]
4. Gibbons C, Wilson R, Samal L, Lehmann C, Dickersin K, Aboumatar H. Impact of consumer health informatics applications. Bethesda, MD: Agency for Healthcare Research and Quality, US Department of Health and Human Services,; 2009.
5. Greenhalgh T. Patient and public involvement in chronic illness: beyond the expert patient. BMJ 2009 Feb 17;338(feb17 1):b49-b49. [doi: 10.1136/bmj.b49]
6. Hibbard JH, Greene J. What the evidence shows about patient activation: better health outcomes and care experiences; fewer data on costs. Health Aff (Millwood) 2013 Feb;32(2):207-214. [doi: 10.1377/hlthaff.2012.1061] [Medline: 23381511]
7. Hibbard JH, Mahoney ER, Stock R, Tusler M. Do increases in patient activation result in improved self-management behaviors? Health Serv Res 2007 Aug;42(4):1443-1463 [FREE Full text] [doi: 10.1111/j.1475-6773.2006.00669.x] [Medline: 17610432]
8. Nolte S, Elsworth GR, Sinclair AJ, Osborne RH. The extent and breadth of benefits from participating in chronic disease self-management courses: a national patient-reported outcomes survey. Patient Educ Couns 2007 Mar;65(3):351-360. [doi: 10.1016/j.pec.2006.08.016] [Medline: 17027221]
9. Pal K, Eastwood S, Michie S, Farmer A, Barnard M, Peacock R. Computer-based diabetes self-management interventions for adults with type 2 diabetes mellitus. Cochrane Database Syst Rev 2013;3:1-100. [doi: 10.1002/14651858.CD008776.pub2]
10. Yu CH, Parsons JA, Mamdani M, Lebovic G, Hall S, Newton D, et al. A web-based intervention to support self-management of patients with type 2 diabetes mellitus: effect on self-efficacy, self-care and diabetes distress. BMC Med Inform Decis Mak 2014;14:117 [FREE Full text] [doi: 10.1186/s12911-014-0117-3] [Medline: 25495847]
11. Fox S, Duggan M. Pew Research Center's Internet & American Life Project. 2013. Mobile Health 2012 URL: http://www.pewinternet.org/files/old-media//Files/Reports/2012/PIP-MobileHealth2012-FINAL.pdf [accessed 2015-08-12] [WebCite Cache ID 6ajWW0fHr]
12. App retention improves: Apps used only once declines to 20%. 2014. URL: http://info.localytics.com/blog/app-retention-improves [accessed 2015-08-12] [WebCite Cache ID 6ajWYclWe]
13. Laing BY, Mangione CM, Tseng C, Leng M, Vaisberg E, Mahida M, et al. Effectiveness of a smartphone application for weight loss compared with usual care in overweight primary care patients: a randomized, controlled trial. Ann Intern Med 2014 Nov 18;161(10 Suppl):S5-12 [FREE Full text] [doi: 10.7326/M13-3005] [Medline: 25402403]
14. Roblin DW, Houston TK, Allison JJ, Joski PJ, Becker ER. Disparities in use of a personal health record in a managed care organization. J Am Med Inform Assoc 2009;16(5):683-689 [FREE Full text] [doi: 10.1197/jamia.M3169] [Medline: 19567790]
15. Ammenwerth E, Iller C, Mahler C. IT-adoption and the interaction of task, technology and individuals: a fit framework and a case study. BMC Med Inform Decis Mak 2006;6:3 [FREE Full text] [doi: 10.1186/1472-6947-6-3] [Medline: 16401336]
16. Ozkaynak M, Brennan P, Hanauer D, Johnson S, Aarts J, Zheng K. Patient-centered care requires a patient-oriented workflow model. Journal of the American Medical Informatics Association 2013;20:e14-e16. [doi: 10.1136/amiajnl-2013-001633]
17. US Department of HealthHuman Services. Multiple Chronic Medical Conditions and Health-Related Quality of Life in Older Adults, 2004-2006. Preventing Chronic Disease 2010;10:120282-120282. [doi: 10.5888/pcd10.120282]
18. Fried V, Bernstein A, Bush M. Multiple chronic conditions among adults aged 45 and over: Trends over the past 10 years. NCHS Data Brief. Hyattsville, MD: National Center for Health Statistics; 2012.
19. Ward BW, Schiller JS, Goodman RA. Multiple chronic conditions among US adults: a 2012 update. Prev Chronic Dis 2014;11:E62 [FREE Full text] [doi: 10.5888/pcd11.130389] [Medline: 24742395]
20. American Association of Diabetes Educators. Diabetes Educator. 2010. Self-monitoring of blood glucose using glucose meters in the management of type 2 diabetes URL: http://www.diabeteseducator.org/export/sites/aade/-resources/pdf/research/SelfMonitoring2010.pdf [accessed 2015-01-05] [WebCite Cache ID 6VO5IH5El]
21. American Diabetes Association. Standard of Medical Care in Diabetes 2014. Diabetes Care 2014;37(S1):S14-S80. [doi: 10.2337/dc14-S014]
22. McManus RJ, Mant J, Haque MS, Bray EP, Bryan S, Greenfield SM, Hobbs F D Richard, et al. Effect of self-monitoring and medication self-titration on systolic blood pressure in hypertensive patients at high risk of cardiovascular disease: the TASMIN-SR randomized clinical trial. JAMA 2014 Aug 27;312(8):799-808. [doi: 10.1001/jama.2014.10057] [Medline: 25157723]
23. Pignone MP, Ammerman A, Fernandez L, Orleans CT, Pender N, Woolf S, et al. Counseling to promote a healthy diet in adults: a summary of the evidence for the U.S. Preventive Services Task Force. Am J Prev Med 2003 Jan;24(1):75-92. [Medline: 12554027]
24. Zullig LL, Peterson ED, Bosworth HB. Ingredients of successful interventions to improve medication adherence. JAMA 2013 Dec 25;310(24):2611-2612. [doi: 10.1001/jama.2013.282818] [Medline: 24264605]
25. Corbin J, Strauss A. Managing chronic illness at home: Three lines of work. Qualitative Sociology 1985;8(3):224-247.
26. Valdez R, Holden R, Novak L, Veinot T. Transforming consumer health informatics through a patient work framework: Connecting patients to context. Journal of the American Medical Informatics Association 2014:2-10. [doi: 10.1136/amiajnl-2014-002826]
27. Moen A, Brennan PF. Health@Home: the work of health information management in the household (HIMH): implications for consumer health informatics (CHI) innovations. J Am Med Inform Assoc 2005;12(6):648-656 [FREE Full text] [doi: 10.1197/jamia.M1758] [Medline: 16049230]
28. Civan A, Skeels M, Stolyar A, Pratt W. Personal health information management: consumers' perspectives. AMIA Annual Symposium Proceedings 2006:156-160 [FREE Full text] [Medline: 17238322]
29. Zayas-Cabán T. Health information management in the home: a human factors assessment. Work 2012;41(3):315-328. [doi: 10.3233/WOR-2012-1306] [Medline: 22398501]
30. Agarwal R, Khuntia J. Personal health information in the design of consumer health information technology: Background report. In: AHRQ Publication number 09-0075-EF. Rockville, MD: Agency for Healthcare Research and Quality; 2009.
31. Piras E, Zanutto A. Prescriptions, X-rays and Grocery Lists. Designing a Personal Health Record to Support (The Invisible Work Of) Health Information Management in the Household. Comput Supported Coop Work 2010 Nov 3;19(6):585-613. [doi: 10.1007/s10606-010-9128-5]
32. MacGregor JCD, Wathen CN. 'My health is not a job': a qualitative exploration of personal health management and imperatives of the 'new public health'. BMC Public Health 2014;14:726 [FREE Full text] [doi: 10.1186/1471-2458-14-726] [Medline: 25030501]
33. Unruh KT, Pratt W. The Invisible Work of Being a Patient and Implications for Health Care: "[the doctor is] my business partner in the most important business in my life, staying alive". 2008 Presented at: Ethnographic Praxis in Industry Conference; 2008; Prague, Czech Republic p. 40-50. [doi: 10.1111/j.1559-8918.2008.tb00093.x]
34. Unruh KT, Pratt W. Barriers to organizing information during cancer care: "I don't know how people do it.". AMIA Annu Symp Proc 2008:742-746 [FREE Full text] [Medline: 18999223]
35. Klasnja P, Hartzler AC, Unruh KT, Pratt W. Blowing in the Wind: Unanchored Patient Information Work during Cancer Care. In: CHI Conf Proc. 2010 Presented at: Conference on Human Factors in Computing Systems; 2010; Atlanta, GA p. 193-202 URL: http://europepmc.org/abstract/MED/20697453 [WebCite Cache] [doi: 10.1145/1753326.1753355]
36. Unruh KT, Skeels M, Civan-Hartzler A, Pratt W. Transforming Clinic Environments into Information Workspaces for Patients. In: CHI Conf Proc. 2010 Presented at: Conference on Human Factors in Computing Systems; 2010; Atlanta, GA p. 183-192 URL: http://europepmc.org/abstract/MED/21654895 [WebCite Cache] [doi: 10.1145/1753326.1753354]
37. Strauss A, Corbin J. Basics of Qualitative Research: Techniques and Procedures for Developing Grounded Theory. 2nd ed. Thousand Oaks, CA: Sage; 1998.
38. Braun V, Clarke V. Using thematic analysis in psychology. Qualitative Research in Psychology 2006 Jan;3(2):77-101. [doi: 10.1191/1478088706qp063oa]
39. Morse JM, Barrett M, Mayan M, Olson K, Speirs J. Verification strategies for establishing reliability and validity in qualitative research. International Journal of Qualitative Methods 2002;1(2):1-19.
40. Morse J. The Significance of Saturation. Qualitative Health Research 1995 May 01;5(2):147-149. [doi: 10.1177/104973239500500201]
41. Grindrod KA, Li M, Gates A. Evaluating user perceptions of mobile medication management applications with older adults: a usability study. JMIR Mhealth Uhealth 2014;2(1):e11 [FREE Full text] [doi: 10.2196/mhealth.3048] [Medline: 25099993]
42. Grifantini K. Advances in management technology for diabetes. IEEE Pulse 2013:40-44.
43. Estrin D. Small data, where n=me. Communications of the ACM 2014;57(4):32-34.
44. Hsieh C, Tangmunarunkit H, Alquaddoomi F, Jenkins J, Kang J, Ketcham C. Lifestreams: A modular sense-making toolset for identifying important patterns from everyday life. In: Sensys '13: Proceedings of the 11th ACM Conference on Embedded Networked Sensor Systems. 2013 Presented at: ACM Conference on Embedded Networked Sensor Systems; Nov. 11-14, 2013; Rome, Italy. [doi: 10.1145/2517351.2517368]
45. Leahey T, Rosen J. DietBet: A Web-Based Program that Uses Social Gaming and Financial Incentives to Promote Weight Loss. JMIR Serious Games 2014;2(1):e2 [FREE Full text] [doi: 10.2196/games.2987] [Medline: 25658966]
46. Ruggiero L, Moadsiri A, Quinn LT, Riley BB, Danielson KK, Monahan C, et al. Diabetes island: preliminary impact of a virtual world self-care educational intervention for african americans with type 2 diabetes. JMIR Serious Games 2014;2(2):-[FREE Full text] [doi: 10.2196/games.3260] [Medline: 25584346]
47. Gucciardi E, Fortugno M, Senchuk A, Beanlands H, McCay E, Peel EE. Self-monitoring of blood glucose in Black Caribbean and South Asian Canadians with non-insulin treated Type 2 diabetes mellitus: a qualitative study of patients' perspectives. BMC Endocr Disord 2013;13:46 [FREE Full text] [doi: 10.1186/1472-6823-13-46] [Medline: 24119213]
48. Peel E, Douglas M, Lawton J. Self monitoring of blood glucose in type 2 diabetes: longitudinal qualitative study of patients' perspectives. BMJ 2007 Sep 8;335(7618):493 [FREE Full text] [doi: 10.1136/bmj.39302.444572.DE] [Medline: 17761996]
49. Peel E, Parry O, Douglas M, Lawton J. Blood glucose self-monitoring in non-insulin-treated type 2 diabetes: a qualitative study of patients' perspectives. Br J Gen Pract 2004 Mar;54(500):183-188 [FREE Full text] [Medline: 15006123]
50. Leventhal H, Leventhal EA, Breland JY. Cognitive science speaks to the "common-sense" of chronic illness management. Ann Behav Med 2011 Apr;41(2):152-163. [doi: 10.1007/s12160-010-9246-9] [Medline: 21136224]
51. Meyer D, Leventhal H, Gutmann M. Common-sense models of illness: the example of hypertension. Health Psychol 1985;4(2):115-135. [Medline: 4018002]
52. Torbjørnsen A, Jenum A, Småstuen MC, Arsand E, Holmen H, Wahl A, et al. A Low-Intensity Mobile Health Intervention With and Without Health Counseling for Persons With Type 2 Diabetes, Part 1: Baseline and Short-Term Results From a Randomized Controlled Trial in the Norwegian Part of RENEWING HEALTH. JMIR Mhealth Uhealth 2014;2(4):e52 [FREE Full text] [doi: 10.2196/mhealth.3535] [Medline: 25499592]
53. Ward BW, Schiller JS. Prevalence of multiple chronic conditions among US adults: estimates from the National Health Interview Survey, 2010. Prev Chronic Dis 2013;10:E65 [FREE Full text] [doi: 10.5888/pcd10.120203] [Medline: 23618545]
54. Rollnick S, Miller W. What is motivational interviewing? Behavioral and Cognitive Psychotherapy 1995;23(4):325-334.
55. Roberto CA, Kawachi I. Use of psychology and behavioral economics to promote healthy eating. Am J Prev Med 2014 Dec;47(6):832-837. [doi: 10.1016/j.amepre.2014.08.002] [Medline: 25441239]