This paper is in the following e-collection/theme issue:

Personal Health Records, Patient-Accessible Electronic Health Records, Patient Portals (542) Participatory Medicine & E-Patients (758)

Published on in Vol 17, No 6 (2015): June

The Invisible Work of Personal Health Information Management Among People With Multiple Chronic Conditions: Qualitative Interview Study Among Patients and Providers

The Invisible Work of Personal Health Information Management Among People With Multiple Chronic Conditions: Qualitative Interview Study Among Patients and Providers

The Invisible Work of Personal Health Information Management Among People With Multiple Chronic Conditions: Qualitative Interview Study Among Patients and Providers

Authors of this article:

Jessica S Ancker1 Author Orcid Image ;   Holly O Witteman2, 3, 4 Author Orcid Image ;   Baria Hafeez1 Author Orcid Image ;   Thierry Provencher3 Author Orcid Image ;   Mary Van de Graaf1 Author Orcid Image ;   Esther Wei5 Author Orcid Image
Article Authors Cited by (100) Tweetations (123) Metrics

Journals

  1. Klein D, Pham K, Samy L, Bluth A, Nazi K, Witry M, Klutts J, Grant K, Gundlapalli A, Kochersberger G, Pfeiffer L, Romero S, Vetter B, Turvey C. The Veteran-Initiated Electronic Care Coordination: A Multisite Initiative to Promote and Evaluate Consumer-Mediated Health Information Exchange. Telemedicine and e-Health 2017;23(4):264 View
  2. Piras E. Beyond self-tracking: Exploring and unpacking four emerging labels of patient data work. Health Informatics Journal 2019;25(3):598 View
  3. Benham-Hutchins M, Staggers N, Mackert M, Johnson A, deBronkart D. “I want to know everything”: a qualitative study of perspectives from patients with chronic diseases on sharing health information during hospitalization. BMC Health Services Research 2017;17(1) View
  4. Nay O. Can a virus undermine human rights?. The Lancet Public Health 2020;5(5):e238 View
  5. Martinez V, Marquard J, Saver B, Garber L, Preusse P. Consumer Health Informatics Interventions Must Support User Workflows, Be Easy-To-Use, and Improve Cognition: Applying the SEIPS 2.0 Model to Evaluate Patients’ and Clinicians’ Experiences with the CONDUIT-HID Intervention. International Journal of Human–Computer Interaction 2017;33(4):333 View
  6. Klein D, Fix G, Hogan T, Simon S, Nazi K, Turvey C. Use of the Blue Button Online Tool for Sharing Health Information: Qualitative Interviews With Patients and Providers. Journal of Medical Internet Research 2015;17(8):e199 View
  7. Thompson M, Reilly J, Valdez R. Work system barriers to patient, provider, and caregiver use of personal health records: A systematic review. Applied Ergonomics 2016;54:218 View
  8. Werner N, Tong M, Borkenhagen A, Holden R. Performance-Shaping Factors Affecting Older Adults’ Hospital-to-Home Transition Success: A Systems Approach. The Gerontologist 2019;59(2):303 View
  9. Jolliff A, Hoonakker P, Ponto K, Tredinnick R, Casper G, Martell T, Werner N. The desktop, or the top of the desk? The relative usefulness of household features for personal health information management. Applied Ergonomics 2020;82:102912 View
  10. Turner A, Taylor J, Hartzler A, Osterhage K, Bosold A, Painter I, Demiris G. Personal health information management among healthy older adults: Varying needs and approaches. Journal of the American Medical Informatics Association 2021;28(2):322 View
  11. Faiola A, Holden R. Consumer Health Informatics: Empowering Healthy-Living-Seekers Through mHealth. Progress in Cardiovascular Diseases 2017;59(5):479 View
  12. Maslen S, Lupton D. Enacting chronic illness with and through digital media: a feminist new materialist approach. Information, Communication & Society 2020;23(11):1640 View
  13. Mäenpää T, Asikainen P, Suominen T. Views of patient, healthcare professionals and administrative staff on flow of information and collaboration in a regional health information exchange: a qualitative study. Scandinavian Journal of Caring Sciences 2017;31(4):939 View
  14. Novak L, Baum H, Gray M, Unertl K, Tippey K, Simpson C, Uskavitch J, Anders S. Everyday objects and spaces: How they afford resilience in diabetes routines. Applied Ergonomics 2020;88:103185 View
  15. Bruni A, Miele F, Piras E. Organizzare network socio-sanitari: il lavoro di pazienti e familiari nell'orchestrazione dei servizi di cura. STUDI ORGANIZZATIVI 2017;(1):67 View
  16. Turner A, Osterhage K, Loughran J, Painter I, Demiris G, Hartzler A, Phelan E. Emergency information management needs and practices of older adults: A descriptive study. International Journal of Medical Informatics 2018;111:149 View
  17. Linnenkamp R, Drenkard K. Coordinating Care. Nursing Administration Quarterly 2016;40(2):122 View
  18. McGilton K, Vellani S, Yeung L, Chishtie J, Commisso E, Ploeg J, Andrew M, Ayala A, Gray M, Morgan D, Chow A, Parrott E, Stephens D, Hale L, Keatings M, Walker J, Wodchis W, Dubé V, McElhaney J, Puts M. Identifying and understanding the health and social care needs of older adults with multiple chronic conditions and their caregivers: a scoping review. BMC Geriatrics 2018;18(1) View
  19. Kotwal S, Peña I, Howell E, Wright S. Defining Clinical Excellence in Hospital Medicine: A Qualitative Study. Journal of Continuing Education in the Health Professions 2017;37(1):3 View
  20. Sun S, Belkin N. Managing personal health information in the home: Strategies of diabetes patients in the US and China. Proceedings of the Association for Information Science and Technology 2015;52(1):1 View
  21. FitzPatrick M, Hess A, Sudbury-Riley L, Schulz P. A Typology of Patients Based on Decision-Making Styles: Cross-Sectional Survey Study. Journal of Medical Internet Research 2019;21(11):e15332 View
  22. Huvila I, Enwald H, Eriksson-Backa K, Hirvonen N, Nguyen H, Scandurra I. Anticipating ageing: Older adults reading their medical records. Information Processing & Management 2018;54(3):394 View
  23. Holden R, Karanam Y, Cavalcanti L, Parmar T, Kodthala P, Fowler N, Bateman D. Health information management practices in informal caregiving: An artifacts analysis and implications for IT design. International Journal of Medical Informatics 2018;120:31 View
  24. Nambisan P. Factors that impact Patient Web Portal Readiness (PWPR) among the underserved. International Journal of Medical Informatics 2017;102:62 View
  25. Gorman R, Wellbeloved-Stone C, Valdez R. Uncovering the invisible patient work system through a case study of breast cancer self-management. Ergonomics 2018;61(12):1575 View
  26. Gui X, Chen Y, Pine K. Navigating the Healthcare Service "Black Box". Proceedings of the ACM on Human-Computer Interaction 2018;2(CSCW):1 View
  27. Mercer K, Burns C, Guirguis L, Chin J, Dogba M, Dolovich L, Guénette L, Jenkins L, Légaré F, McKinnon A, McMurray J, Waked K, Grindrod K. Physician and Pharmacist Medication Decision-Making in the Time of Electronic Health Records: Mixed-Methods Study. JMIR Human Factors 2018;5(3):e24 View
  28. Ware P, Bartlett S, Paré G, Symeonidis I, Tannenbaum C, Bartlett G, Poissant L, Ahmed S. Using eHealth Technologies: Interests, Preferences, and Concerns of Older Adults. Interactive Journal of Medical Research 2017;6(1):e3 View
  29. Park M, Oh H, You S. Health information seeking among people with multiple chronic conditions: Contextual factors and their associations mined from questions in social media. Library & Information Science Research 2020;42(3):101030 View
  30. Weaver S, Jacobsen P. Cancer care coordination: opportunities for healthcare delivery research. Translational Behavioral Medicine 2018;8(3):503 View
  31. Grundstrom C, Korhonen O, Väyrynen K, Isomursu M. Insurance Customers’ Expectations for Sharing Health Data: Qualitative Survey Study. JMIR Medical Informatics 2020;8(3):e16102 View
  32. Bruni A, Miele F, Piras E. ‘Homemade’: Building, mending, and coordinating a care network. Social Science & Medicine 2019;237:112449 View
  33. Lee Y, Cho Y, Oh H. Multiple chronic conditions and risk of cognitive impairment and dementia among older Americans: findings from the Aging, Demographics, and Memory Study (ADAMS). Aging, Neuropsychology, and Cognition 2021;28(4):493 View
  34. Steitz B, Unertl K, Levy M. Characterizing communication patterns among members of the clinical care team to deliver breast cancer treatment. Journal of the American Medical Informatics Association 2020;27(2):236 View
  35. Chen A, Kaplan S, Carriere R. A constant conversation: tuning into and harmonizing the needs and priorities of the body and mind. International Journal of Qualitative Studies on Health and Well-being 2017;12(1):1350550 View
  36. West P, Van Kleek M, Giordano R, Weal M, Shadbolt N. Information Quality Challenges of Patient-Generated Data in Clinical Practice. Frontiers in Public Health 2017;5 View
  37. Kim S, Sinn D, Syn S. Analysis of College Students’ Personal Health Information Activities: Online Survey. Journal of Medical Internet Research 2018;20(4):e132 View
  38. Ploeg J, Yous M, Fraser K, Dufour S, Baird L, Kaasalainen S, McAiney C, Markle-Reid M. Healthcare providers’ experiences in supporting community-living older adults to manage multiple chronic conditions: a qualitative study. BMC Geriatrics 2019;19(1) View
  39. Rooks R, Kapral C, Mathis A. Chronic Conditions May Be More Important Than Race or Ethnicity in Relation to Health Information Seeking and Use. Journal of Aging and Health 2019;31(4):611 View
  40. Vest J, Ancker J. Health information exchange in the wild: the association between organizational capability and perceived utility of clinical event notifications in ambulatory and community care. Journal of the American Medical Informatics Association 2017;24(1):39 View
  41. Taylor J, Hartzler A, Osterhage K, Demiris G, Turner A. Monitoring for change: the role of family and friends in helping older adults manage personal health information. Journal of the American Medical Informatics Association 2018;25(8):989 View
  42. Bell C, Guerinet J, Atkinson K, Wilson K. Feasibility and Limitations of Vaccine Two-Dimensional Barcoding Using Mobile Devices. Journal of Medical Internet Research 2016;18(6):e143 View
  43. Hartzler A, Osterhage K, Demiris G, Phelan E, Thielke S, Turner A. Understanding views on everyday use of personal health information: Insights from community dwelling older adults. Informatics for Health and Social Care 2018;43(3):320 View
  44. Werner N, Jolliff A, Casper G, Martell T, Ponto K. Home is where the head is: a distributed cognition account of personal health information management in the home among those with chronic illness. Ergonomics 2018;61(8):1065 View
  45. Bazzano A, Wharton M, Monnette A, Nauman E, Price-Haywood E, Glover C, Dominick P, Malone P, Hu G, Shi L. Barriers and Facilitators in Implementing Non-Face-to-Face Chronic Care Management in an Elderly Population with Diabetes: A Qualitative Study of Physician and Health System Perspectives. Journal of Clinical Medicine 2018;7(11):451 View
  46. Greenberg A, Falisi A, Finney Rutten L, Chou W, Patel V, Moser R, Hesse B. Access to Electronic Personal Health Records Among Patients With Multiple Chronic Conditions: A Secondary Data Analysis. Journal of Medical Internet Research 2017;19(6):e188 View
  47. Caldeira C, Gui X, Reynolds T, Bietz M, Chen Y. Managing healthcare conflicts when living with multiple chronic conditions. International Journal of Human-Computer Studies 2021;145:102494 View
  48. Weaver S, Che X, Petersen L, Hysong S. Unpacking Care Coordination Through a Multiteam System Lens. Medical Care 2018;56(3):247 View
  49. Holden R, Valdez R, Schubert C, Thompson M, Hundt A. Macroergonomic factors in the patient work system: examining the context of patients with chronic illness. Ergonomics 2017;60(1):26 View
  50. Piras E, Miele F. Clinical self-tracking and monitoring technologies: negotiations in the ICT-mediated patient–provider relationship. Health Sociology Review 2017;26(1):38 View
  51. Bowen‐Ziecheck A, Bartlett J. An integrated framework of patient data ownership. Proceedings of the Association for Information Science and Technology 2019;56(1):615 View
  52. Srinivas P, Cornet V, Holden R. Human Factors Analysis, Design, and Evaluation of Engage, a Consumer Health IT Application for Geriatric Heart Failure Self-Care. International Journal of Human–Computer Interaction 2017;33(4):298 View
  53. Eastway J, Lizarondo L. Experiences of adult patients with chronic non-communicable disease using electronic personal health records for self-management: a qualitative systematic review protocol. JBI Database of Systematic Reviews and Implementation Reports 2019;17(11):2334 View
  54. Shen N, Bernier T, Sequeira L, Strauss J, Silver M, Carter-Langford A, Wiljer D. Understanding the patient privacy perspective on health information exchange: A systematic review. International Journal of Medical Informatics 2019;125:1 View
  55. Xu D, Hu P, Huang T, Fang X, Hsu C. A deep learning–based, unsupervised method to impute missing values in electronic health records for improved patient management. Journal of Biomedical Informatics 2020;111:103576 View
  56. Avdagovska M, Menon D, Stafinski T. Capturing the Impact of Patient Portals Based on the Quadruple Aim and Benefits Evaluation Frameworks: Scoping Review. Journal of Medical Internet Research 2020;22(12):e24568 View
  57. McLean B, Hossain N, Donison V, Gray M, Durbano S, Haase K, Alibhai S, Puts M. Providing Medical Information to Older Adults in a Web-Based Environment: Systematic Review. JMIR Aging 2021;4(1):e24092 View
  58. Witteman H, Vaisson G, Provencher T, Chipenda Dansokho S, Colquhoun H, Dugas M, Fagerlin A, Giguere A, Haslett L, Hoffman A, Ivers N, Légaré F, Trottier M, Stacey D, Volk R, Renaud J. An 11-Item Measure of User- and Human-Centered Design for Personal Health Tools (UCD-11): Development and Validation. Journal of Medical Internet Research 2021;23(3):e15032 View
  59. Garg T, Polenick C, Schoenborn N, Jih J, Hajduk A, Wei M, Hughes J. Innovative Strategies to Facilitate Patient-Centered Research in Multiple Chronic Conditions. Journal of Clinical Medicine 2021;10(10):2112 View
  60. Koopman W, LaDonna K, Anne Kinsella E, Venance S, Watling C. Getting airtime: Exploring how patients shape the stories they tell health practitioners. Medical Education 2021;55(10):1142 View
  61. Xu D, Sheng J, Hu P, Huang T, Hsu C. A Deep Learning–Based Unsupervised Method to Impute Missing Values in Patient Records for Improved Management of Cardiovascular Patients. IEEE Journal of Biomedical and Health Informatics 2021;25(6):2260 View
  62. Valdez R, Detmer D, Bourne P, Kim K, Austin R, McCollister A, Rogers C, Waters-Wicks K. Informatics-enabled citizen science to advance health equity. Journal of the American Medical Informatics Association 2021;28(9):2009 View
  63. Beneteau E, Paradiso A, Pratt W. Telehealth experiences of providers and patients who use augmentative and alternative communication. Journal of the American Medical Informatics Association 2022;29(3):481 View
  64. Randine P, Sharma A, Hartvigsen G, Johansen H, Årsand E. Information and communication technology-based interventions for chronic diseases consultation: Scoping review. International Journal of Medical Informatics 2022;163:104784 View
  65. Brown R, Coventry L, Sillence E, Blythe J, Stumpf S, Bird J, Durrant A. Collecting and sharing self-generated health and lifestyle data: Understanding barriers for people living with long-term health conditions – a survey study. DIGITAL HEALTH 2022;8:205520762210844 View
  66. Snowdon D, Srikanth V, Beare R, Marsh L, Parker E, Naude K, Andrew N. A landscape assessment of the use of patient reported outcome measures in research, quality improvement and clinical care across a healthcare organisation. BMC Health Services Research 2023;23(1) View
  67. Ancker J, Benda N, Reddy M, Unertl K, Veinot T. Guidance for publishing qualitative research in informatics. Journal of the American Medical Informatics Association 2021;28(12):2743 View
  68. Whitman S, Pine K, Thorsteinsdottir B, Organick-Lee P, Thota A, Espinoza Suarez N, Johnston E, Boehmer K. Bodily Experiences of Illness and Treatment as Information Work: The Case of Chronic Kidney Disease. Proceedings of the ACM on Human-Computer Interaction 2021;5(CSCW2):1 View
  69. Temina O, Zvonareva O, Horstman K. Patients' work and fluid trajectories: Access to medicines for oncological and rare diseases in Russia. Social Science & Medicine 2023;317:115613 View
  70. Burgess E, Kaziunas E, Jacobs M. Care Frictions: A Critical Reframing of Patient Noncompliance in Health Technology Design. Proceedings of the ACM on Human-Computer Interaction 2022;6(CSCW2):1 View
  71. Kawu A, Hederman L, Doyle J, O'Sullivan D. Patient generated health data and electronic health record integration, governance and socio-technical issues: A narrative review. Informatics in Medicine Unlocked 2023;37:101153 View
  72. Simpson E, Brown R, Sillence E, Coventry L, Lloyd K, Gibbs J, Tariq S, Durrant A. Understanding the Barriers and Facilitators to Sharing Patient-Generated Health Data Using Digital Technology for People Living With Long-Term Health Conditions: A Narrative Review. Frontiers in Public Health 2021;9 View
  73. Ouyang W, Xie W, Xin Z, He H, Wen T, Peng X, Dai P, Yuan Y, Liu F, Chen Y, Luo A. Evolutionary Overview of Consumer Health Informatics: Bibliometric Study on the Web of Science from 1999 to 2019. Journal of Medical Internet Research 2021;23(9):e21974 View
  74. Huynh-Dagher S, Lamé G, Duong T, Jankovic M. Design research in healthcare: a systematic literature review of key design journals. Journal of Engineering Design 2022;33(8-9):522 View
  75. Cotton K, Booth R, McMurray J, Treesh R. Understanding health information exchange processes within Canadian long‐term care: A scoping review. International Journal of Older People Nursing 2023;18(1) View
  76. Seale D, LeRouge C, Kolotylo-Kulkarni M. A Description of Personal Health Information Management Work With a Spotlight on the Practices of Older Adults: Qualitative e-Delphi Study With Professional Organizers. Journal of Medical Internet Research 2023;25:e42330 View
  77. Johansen S, Maclachlan L, Hillier R, Taylor G, Mellor R, Rathleff M, Vicenzino B. Exploring patients' and physiotherapists' visions on modelling treatments and optimising self-management strategies for patellofemoral pain: A future workshop approach.. Musculoskeletal Science and Practice 2022;60:102567 View
  78. Brown R, Sillence E, Coventry L, Simpson E, Gibbs J, Tariq S, C. Durrant A, Lloyd K. Understanding the attitudes and experiences of people living with potentially stigmatised long-term health conditions with respect to collecting and sharing health and lifestyle data. DIGITAL HEALTH 2022;8:205520762210897 View
  79. Austin R, Martin C, Jones C, Lu S, Jantraporn R, Nestrasil I, Martin K, Monsen K. Translation and validation of the Omaha System into English language simplified Omaha System terms. Kontakt 2022;24(1):48 View
  80. Sung M, He J, Zhou Q, Chen Y, Ji J, Chen H, Li Z. Using an Integrated Framework to Investigate the Facilitators and Barriers of Health Information Technology Implementation in Noncommunicable Disease Management: Systematic Review. Journal of Medical Internet Research 2022;24(7):e37338 View
  81. Tengilimoğlu D, Orhan F, Şenel Tekin P, Younis M. Analysis of Publications on Health Information Management Using the Science Mapping Method: A Holistic Perspective. Healthcare 2024;12(3):287 View
  82. Tahsin F, Bahr T, Shaw J, Shachak A, Gray C. The relationship between treatment burden and the use of telehealth technologies among patients with chronic conditions: A scoping review. Health Policy and Technology 2024;13(2):100855 View
  83. Myneni S, Zingg A, Singh T, Ross A, Franklin A, Rogith D, Refuerzo J. Digital health technologies for high-risk pregnancy management: three case studies using Digilego framework. JAMIA Open 2024;7(1) View
  84. Şahin D, Kurutkan M, Arslan T. Predictors of e-Nabız acceptance among physicians: an integration of UTAUT, trust, and privacy factors. Journal of Science and Technology Policy Management 2024 View
  85. Claggett J, Petter S, Joshi A, Ponzio T, Kirkendall E. An Infrastructure Framework for Remote Patient Monitoring Interventions and Research. Journal of Medical Internet Research 2024;26:e51234 View
  86. Solh Dost L, Gastaldi G, Dos Santos Mamed M, Schneider M. Navigating outpatient care of patients with type 2 diabetes after hospital discharge - a qualitative longitudinal study. BMC Health Services Research 2024;24(1) View

Books/Policy Documents

  1. Montanini L, Raffaeli L, De Santis A, Del Campo A, Chiatti C, Paciello L, Gambi E, Spinsante S. Information and Communication Technologies for Ageing Well and e-Health. View
  2. Bruno J, Tverdek F. Oncologic Critical Care. View
  3. Bruno J, Tverdek F. Oncologic Critical Care. View
  4. Bruno J, Tverdek F. Oncologic Critical Care. View
  5. Valdez R, Holden R. The Patient Factor. View
  6. Cushing A, Kerrigan P. Information for a Better World: Normality, Virtuality, Physicality, Inclusivity. View
  7. Andersen T, Fritsch J, Matthiesen S. Pervasive Computing Technologies for Healthcare. View
  8. Ancker J, Turchioe M. Clinical Decision Support and Beyond. View