The invisible work of personal health information management among people with multiple chronic conditions: Qualitative interview study among patients and providers

Journal of Medical Internet Research

Volumn 17, Issue 6, 2015, Pages e137-

  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

Chronic disease; Consumer health information technology; Diabetes; Electronic medical records; Electronic patient portals; Information management; Personal health records (PHRs); Qualitative research

Indexed keywords

ADULT; AGED; CHRONIC DISEASE; CONSUMER HEALTH INFORMATION; COST OF ILLNESS; DISEASE MANAGEMENT; FEMALE; HEALTH CARE DELIVERY; HEALTH CARE PERSONNEL; HUMAN; INFORMATION DISSEMINATION; MALE; MEDICAL INFORMATICS; MEDICAL INFORMATION SYSTEM; MEDICAL RECORD; MIDDLE AGED; NEW YORK; PERCEPTION; QUALITATIVE RESEARCH; VERY ELDERLY;

ADULT; AGED; AGED, 80 AND OVER; CHRONIC DISEASE; CONSUMER HEALTH INFORMATION; COST OF ILLNESS; DELIVERY OF HEALTH CARE; DISEASE MANAGEMENT; FEMALE; HEALTH INFORMATION EXCHANGE; HEALTH INFORMATION MANAGEMENT; HEALTH PERSONNEL; HEALTH RECORDS, PERSONAL; HUMANS; INFORMATION DISSEMINATION; MALE; MEDICAL INFORMATICS; MIDDLE AGED; NEW YORK CITY; PERCEPTION; QUALITATIVE RESEARCH;

EID: 84936741316     PISSN: None     EISSN: 14388871     Source Type: Journal    
DOI: 10.2196/jmir.4381     Document Type: Article

References (60)

1. Multiple chronic conditions - a strategic framework: Optimum health and quality of life for individuals with multiple chronic conditions. Washington, DC: US Department of Health and Human Services; 2010. URL: http://www.hhs.gov/ash/initiatives/mcc/mcc-framework.pdf [accessed 2015-05-27] [WebCite Cache ID 6YqLxpuse]
2. Smith PC, Araya-Guerra R, Bublitz C, Parnes B, Dickinson LM, Van VR, et al. Missing clinical information during primary care visits. JAMA 2005 Feb 2;293(5):565-571. [doi: 10.1001/jama.293.5.565] [Medline: 15687311]
3. Coleman EA. Falling through the cracks: challenges and opportunities for improving transitional care for persons with continuous complex care needs. J Am Geriatr Soc 2003 Apr;51(4):549-555. [Medline: 12657078]
4. Coleman EA, Berenson RA. Lost in transition: challenges and opportunities for improving the quality of transitional care. Ann Intern Med 2004 Oct 5;141(7):533-536. [Medline: 15466770]
5. Bodenheimer T. Coordinating care-a perilous journey through the health care system. N Engl J Med 2008 Mar 6;358(10):1064-1071. [doi: 10.1056/NEJMhpr0706165] [Medline: 18322289]
6. Cwinn MA, Forster AJ, Cwinn AA, Hebert G, Calder L, Stiell IG. Prevalence of information gaps for seniors transferred from nursing homes to the emergency department. CJEM 2009 Sep;11(5):462-471 [FREE Full text] [Medline: 19788791]
7. Kuperman GJ. Health-information exchange: why are we doing it, and what are we doing? J Am Med Inform Assoc 2011;18(5):678-682 [FREE Full text] [doi: 10.1136/amiajnl-2010-000021] [Medline: 21676940]
8. National eHealth Collaborative. Health information exchange roadmap: The landscape and the path forward. Washington, DC: Health Information Management Systems Society; 2012 Apr. URL: http://www.himss.org/nehc [accessed 2015-05-27] [WebCite Cache ID 6YqMrWvsV]
9. Blumenthal D, Tavenner M. The "meaningful use" regulation for electronic health records. N Engl J Med 2010 Aug 5;363(6):501-504. [doi: 10.1056/NEJMp1006114] [Medline: 20647183]
10. Cimino JJ, Frisse ME, Halamka J, Sweeney L, Yasnoff W. Consumer-mediated health information exchanges: the 2012 ACMI debate. J Biomed Inform 2014 Apr;48:5-15 [FREE Full text] [doi: 10.1016/j.jbi.2014.02.009] [Medline: 24561078]
11. The Markle Foundation. Attitudes of Americans regarding personal health records and nationwide electronic health information exchange. 2005. URL: http://www.markle.org/publications/951-attitudes-americans-regarding-personal-health-records-and-nationwide-electronic-hea [accessed 2015-05-27] [WebCite Cache ID 6YqNXogO8]
12. Conn J. Blue Button gains fans, apps. Simple tech from VA puts interoperability to work. Mod Healthc 2012 Oct 15;42(42):14. [Medline: 23163087]
13. Archer N, Fevrier-Thomas U, Lokker C, McKibbon KA, Straus SE. Personal health records: a scoping review. J Am Med Inform Assoc 2011;18(4):515-522 [FREE Full text] [doi: 10.1136/amiajnl-2011-000105] [Medline: 21672914]
14. Ancker JS, Silver M, Kaushal R. Rapid growth in use of personal health records in New York, 2012-2013. J Gen Intern Med 2014 Jun;29(6):850-854. [doi: 10.1007/s11606-014-2792-2] [Medline: 24519102]
15. Ammenwerth E, Schnell-Inderst P, Hoerbst A. The Impact of Electronic Patient Portals on Patient Care: A Systematic Review of Controlled Trials. J Med Internet Res 2012;14(6):e162 [FREE Full text] [doi: 10.2196/jmir.2238]
16. Zarcadoolas C, Vaughon WL, Czaja SJ, Levy J, Rockoff ML. Consumers' perceptions of patient-accessible electronic medical records. J Med Internet Res 2013;15(8):e168 [FREE Full text] [doi: 10.2196/jmir.2507] [Medline: 23978618]
17. Patel VN, Dhopeshwarkar RV, Edwards A, Barrón Y, Sparenborg J, Kaushal R. Consumer support for health information exchange and personal health records: a regional health information organization survey. J Med Syst 2012 Jun;36(3):1043-1052. [doi: 10.1007/s10916-010-9566-0] [Medline: 20703633]
18. Dimitropoulos L, Patel V, Scheffler SA, Posnack S. Public attitudes toward health information exchange: perceived benefits and concerns. Am J Manag Care 2011 Dec;17(12 Spec No):SP111-SP116 [FREE Full text] [Medline: 22216769]
19. Patel VN, Dhopeshwarkar RV, Edwards A, Barron Y, Likourezos A, Burd L, et al. Low-income, ethnically diverse consumers' perspective on health information exchange and personal health records. Inform Health Soc Care 2011 Dec;36(4):233-252. [doi: 10.3109/17538157.2011.554930] [Medline: 21851182]
20. Ancker JS, Edwards AM, Miller MC, Kaushal R. Consumer perceptions of electronic health information exchange. Am J Prev Med 2012 Jul;43(1):76-80. [doi: 10.1016/j.amepre.2012.02.027] [Medline: 22704751]
21. 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]
22. 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]
23. Civan A, Skeels M, Stolyar A, Pratt W. Personal health information management: consumers' perspectives. AMIA Annu Symp Proc 2006:156-160 [FREE Full text] [Medline: 17238322]
24. 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]
25. Agarwal R, Khuntia J. Personal health information in the design of consumer health information technology: Background report. (Prepared by Insight Policy Research under contract number HHSA 290200710072T). Rockville, MD: Agency for Healthcare Research and Quality; 2009. URL: http://healthit.ahrq.gov/sites/default/files/docs/citation/09-0075-EF.pdf [accessed 2015-05-27] [WebCite Cache ID 6YqOEZdjd]
26. 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]
27. Corbin J, Strauss A. Managing chronic illness at home: Three lines of work. Qual Sociol 1985;8(3):224-247. [doi: 10.1007/bf00989485]
28. Valdez RS, Holden RJ, Novak LL, Veinot TC. Transforming consumer health informatics through a patient work framework: connecting patients to context. J Am Med Inform Assoc 2015 Jan;22(1):2-10. [doi: 10.1136/amiajnl-2014-002826] [Medline: 25125685]
29. Strauss AL, Fagerhaugh S, Suczek B, Wiener C. The work of hospitalized patients. Soc Sci Med 1982;16(9):977-986. [Medline: 7112176]
30. 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]
31. 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; November 2008; San Jose, CA p. 40-50. [doi: 10.1111/j.1559-8918.2008.tb00093.x]
32. 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]
33. Klasnja P, Hartzler AC, Unruh KT, Pratt W. Blowing in the Wind: Unanchored Patient Information Work during Cancer Care. CHI Conf Proc 2010:193-202 [FREE Full text] [doi: 10.1145/1753326.1753355] [Medline: 20697453]
34. Unruh KT, Skeels M, Civan-Hartzler A, Pratt W. Transforming Clinic Environments into Information Workspaces for Patients. CHI Conf Proc 2010:183-192 [FREE Full text] [doi: 10.1145/1753326.1753354] [Medline: 21654895]
35. Ancker JS, Witteman HO, Hafeez B, Provencher T, Van de Graaf M, Wei E. Challenges to personal data tracking among patients with multiple chronic conditions: "You get reminded you"re a sick person". Under review 2015:1-2 (forthcoming).
36. Corbin JM, Strauss AL. Basics of Qualitative Research: Techniques and Procedures for Developing Grounded Theory. Thousand Oaks, CA: Sage Publications, Inc; 2007.
37. Morse J. The Significance of Saturation. Qualitative Health Research 1995 May 01;5(2):147-149. [doi: 10.1177/104973239500500201]
38. Morse J, 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 [FREE Full text] [WebCite Cache]
39. Meyer D, Leventhal H, Gutmann M. Common-sense models of illness: the example of hypertension. Health Psychol 1985;4(2):115-135. [Medline: 4018002]
40. 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]
41. Grzywacz JG, Arcury TA, Ip EH, Chapman C, Kirk JK, Bell RA, et al. Older adults' common sense models of diabetes. Am J Health Behav 2011 May;35(3):318-333 [FREE Full text] [Medline: 21683021]
42. Unruh KT, Pratt W. Patients as actors: the patient's role in detecting, preventing, and recovering from medical errors. Int J Med Inform 2007 Jun;76 Suppl 1:S236-S244. [doi: 10.1016/j.ijmedinf.2006.05.021] [Medline: 16829180]
43. Daniels AK. Invisible Work. Social Problems 1987 Dec;34(5):403-415. [doi: 10.2307/800538]
44. Rassin M, Zilcha L, Berger M, Silner D. Personal medical documents management-how patients perceive, keep and manage their medical documents: a qualitative study. Int J Nurs Stud 2007 Aug;44(6):862-868. [doi: 10.1016/j.ijnurstu.2006.03.005] [Medline: 16678180]
45. Making IT meaningful: How consumers value and trust health IT. Washington, DC: National Partnership for Women & Families; 2012. URL: http://go.nationalpartnership.org/site/DocServer/HIT-Making-IT-Meaningful-National-Partnership-February-2.pdf?docID=9783 [accessed 2015-05-27] [WebCite Cache ID 6YqSBLhFF]
46. Engaging patients and families: How consumers value and use health IT. Washington DC: National Partnership for Women & Families URL: http://www.nationalpartnership.org/research-library/health-care/HIT/engaging-patients-and-families.pdf [accessed 2015-05-27] [WebCite Cache ID 6YqSFCD2e]
47. Zarcadoolas C, Vaughon WL, Czaja SJ, Levy J, Rockoff ML. Consumers' perceptions of patient-accessible electronic medical records. J Med Internet Res 2013;15(8):e168 [FREE Full text] [doi: 10.2196/jmir.2507] [Medline: 23978618]
48. Woods SS, Schwartz E, Tuepker A, Press NA, Nazi KM, Turvey CL, et al. Patient experiences with full electronic access to health records and clinical notes through the My HealtheVet Personal Health Record Pilot: qualitative study. J Med Internet Res 2013;15(3):e65 [FREE Full text] [doi: 10.2196/jmir.2356] [Medline: 23535584]
49. Leveille SG, Walker J, Ralston JD, Ross SE, Elmore JG, Delbanco T. Evaluating the impact of patients' online access to doctors' visit notes: designing and executing the OpenNotes project. BMC Med Inform Decis Mak 2012;12:32 [FREE Full text] [doi: 10.1186/1472-6947-12-32] [Medline: 22500560]
50. Wright A, Feblowitz J, Maloney FL, Henkin S, Ramelson H, Feltman J, et al. Increasing patient engagement: patients' responses to viewing problem lists online. Appl Clin Inform 2014;5(4):930-942. [doi: 10.4338/ACI-2014-07-RA-0057] [Medline: 25589908]
51. Vest JR, Gamm LD. Health information exchange: persistent challenges and new strategies. J Am Med Inform Assoc 2010;17(3):288-294 [FREE Full text] [doi: 10.1136/jamia.2010.003673] [Medline: 20442146]
52. Campion TR, Ancker JS, Edwards A, Patel V, Kaushal R. Push and pull: physician usage of and satisfaction with health information exchange. AMIA Annu Symp Proc 2012;2012:77-84 [FREE Full text] [Medline: 23304275]
53. Steinbrook R. Personally controlled online health data-the next big thing in medical care? N Engl J Med 2008 Apr 17;358(16):1653-1656. [doi: 10.1056/NEJMp0801736] [Medline: 18420496]
54. Kaelber DC, Shah S, Vincent A, Pan E, Hook J, Johnston D, et al. The Value of Personal Health Records. Charlestown, MA: Center for Information Technology Leadership, Healthcare Information and Management System Society (HIMSS); 2008.
55. Connecting for Health: A Public-Private Collaborative.: The Markle Foundation; 2003. URL: http://www.markle.org/health/connecting-health [accessed 2015-05-30] [WebCite Cache ID 6YvSTAjfH]
56. Lohr S. The New York Times. 2011 Jun. Google to end health record service after it fails to attract users URL: http://www.nytimes.com/2011/06/25/technology/25health.html?-r=1 [accessed 2015-05-27] [WebCite Cache ID 6YqSrickq]
57. Britto MT, Jimison HB, Munafo JK, Wissman J, Rogers ML, Hersh W. Usability testing finds problems for novice users of pediatric portals. J Am Med Inform Assoc 2009;16(5):660-669 [FREE Full text] [doi: 10.1197/jamia.M3154] [Medline: 19567793]
58. Reti SR, Feldman HJ, Ross SE, Safran C. Improving personal health records for patient-centered care. J Am Med Inform Assoc 2010;17(2):192-195 [FREE Full text] [doi: 10.1136/jamia.2009.000927] [Medline: 20190063]
59. O'Donnell HC, Patel V, Kern LM, Barrón Y, Teixeira P, Dhopeshwarkar R, et al. Healthcare consumers' attitudes towards physician and personal use of health information exchange. J Gen Intern Med 2011 Sep;26(9):1019-1026 [FREE Full text] [doi: 10.1007/s11606-011-1733-6] [Medline: 21584839]
60. Ancker JS, Miller M, Patel V, Kaushal R. Sociotechnical challenges to developing technologies for patient access to health information exchange data. J Am Med Inform Assoc 2014;21(4):664-670. [doi: 10.1136/amiajnl-2013-002073] [Medline: 24064443]