Published on in Vol 13, No 3 (2011): Jul-Sep

Managing the Personal Side of Health: How Patient Expertise Differs from the Expertise of Clinicians

Managing the Personal Side of Health: How Patient Expertise Differs from the Expertise of Clinicians

Managing the Personal Side of Health: How Patient Expertise Differs from the Expertise of Clinicians

Authors of this article:

Andrea Hartzler 1 Author Orcid Image ;   Wanda Pratt 1, 2 Author Orcid Image

Journals

  1. Chew S, Khoo C. Comparison of drug information on consumer drug review sites versus authoritative health information websites. Journal of the Association for Information Science and Technology 2016;67(2):333 View
  2. Willis E. Applying the Health Belief Model to Medication Adherence: The Role of Online Health Communities and Peer Reviews. Journal of Health Communication 2018;23(8):743 View
  3. Zhang S, Grave E, Sklar E, Elhadad N. Longitudinal analysis of discussion topics in an online breast cancer community using convolutional neural networks. Journal of Biomedical Informatics 2017;69:1 View
  4. Goeldner M, Herstatt C. Are Patients and Relatives the Better Innovators? The Case of Medical Smartphone Applications. SSRN Electronic Journal 2016 View
  5. Walshe C, Roberts D, Appleton L, Calman L, Large P, Lloyd-Williams M, Grande G, Harris F. Coping Well with Advanced Cancer: A Serial Qualitative Interview Study with Patients and Family Carers. PLOS ONE 2017;12(1):e0169071 View
  6. Andersen T, Bansler J, Kensing F, Moll J, Mønsted T, Nielsen K, Nielsen O, Petersen H, Svendsen J. Aligning Concerns in Telecare: Three Concepts to Guide the Design of Patient-Centred E-Health. Computer Supported Cooperative Work (CSCW) 2018;27(3-6):1181 View
  7. Croucher L, Mertan E, Shafran R, Bennett S. The Use of Mumsnet by Parents of Young People With Mental Health Needs: Qualitative Investigation. JMIR Mental Health 2020;7(9):e18271 View
  8. Yan L, Tan Y. Moment or Momentum? An Empirical Study on Userss Continuous Participation in Online Weight-Loss Communities. SSRN Electronic Journal 2018 View
  9. Lederman R, Fan H, Smith S, Chang S. Who can you trust? Credibility assessment in online health forums. Health Policy and Technology 2014;3(1):13 View
  10. Narducci F, Lops P, Semeraro G. Power to the patients: The HealthNetsocial network. Information Systems 2017;71:111 View
  11. Lee Y, Kamen C, Margolies L, Boehmer U. Online health community experiences of sexual minority women with cancer. Journal of the American Medical Informatics Association 2019;26(8-9):759 View
  12. Petrič G, Atanasova S, Kamin T. Impact of Social Processes in Online Health Communities on Patient Empowerment in Relationship With the Physician: Emergence of Functional and Dysfunctional Empowerment. Journal of Medical Internet Research 2017;19(3):e74 View
  13. Park A, Hartzler A, Huh J, Hsieh G, McDonald D, Pratt W. “How Did We Get Here?”: Topic Drift in Online Health Discussions. Journal of Medical Internet Research 2016;18(11):e284 View
  14. Kraschnewski J, Hwang K, George D, Lehman E, Sciamanna C. Feasibility of utilising an all-volunteer workforce as a disruptive innovation for the US obesity epidemic. Obesity Research & Clinical Practice 2014;8(5):e488 View
  15. Issom D, Henriksen A, Woldaregay A, Rochat J, Lovis C, Hartvigsen G. Factors Influencing Motivation and Engagement in Mobile Health Among Patients With Sickle Cell Disease in Low-Prevalence, High-Income Countries: Qualitative Exploration of Patient Requirements. JMIR Human Factors 2020;7(1):e14599 View
  16. Chen A, Carriere R, Kaplan S, Colht K, Morey O, Flaherty M, Moser G, Slager S, Price C. Exploring collective tagging as a mechanism to elicit language about health management. Proceedings of the Association for Information Science and Technology 2016;53(1):1 View
  17. O’Kane A, Park S, Mentis H, Blandford A, Chen Y. Turning to Peers: Integrating Understanding of the Self, the Condition, and Others’ Experiences in Making Sense of Complex Chronic Conditions. Computer Supported Cooperative Work (CSCW) 2016;25(6):477 View
  18. Zhang S, Bantum E, Owen J, Bakken S, Elhadad N. Online cancer communities as informatics intervention for social support: conceptualization, characterization, and impact. Journal of the American Medical Informatics Association 2017;24(2):451 View
  19. Chen A, Carriere R, Kaplan S. The User Knows What to Call It: Incorporating Patient Voice Through User-Contributed Tags on a Participatory Platform About Health Management. Journal of Medical Internet Research 2017;19(9):e292 View
  20. Zhang Y, Sun Y, Kim Y. The influence of individual differences on consumer's selection of online sources for health information. Computers in Human Behavior 2017;67:303 View
  21. Waweru E, Sarkar N, Ssengooba F, Gruénais M, Broerse J, Criel B, Seale H. Stakeholder perceptions on patient-centered care at primary health care level in rural eastern Uganda: A qualitative inquiry. PLOS ONE 2019;14(8):e0221649 View
  22. Huh J, Liu L, Neogi T, Inkpen K, Pratt W. Health Vlogs as Social Support for Chronic Illness Management. ACM Transactions on Computer-Human Interaction 2014;21(4):1 View
  23. Munson S, Cavusoglu H, Frisch L, Fels S. Sociotechnical Challenges and Progress in Using Social Media for Health. Journal of Medical Internet Research 2013;15(10):e226 View
  24. Wang J, Shih P, Carroll J. Life After Weight Loss: Design Implications for Community-based Long-term Weight Management. Computer Supported Cooperative Work (CSCW) 2015;24(4):353 View
  25. Kazmer M, Lustria M, Cortese J, Burnett G, Kim J, Ma J, Frost J. Distributed knowledge in an online patient support community: Authority and discovery. Journal of the Association for Information Science and Technology 2014;65(7):1319 View
  26. Yan L, Tan Y. The Consensus Effect in Online Health-Care Communities. Journal of Management Information Systems 2017;34(1):11 View
  27. Park A, Conway M, Chen A. Examining thematic similarity, difference, and membership in three online mental health communities from reddit: A text mining and visualization approach. Computers in Human Behavior 2018;78:98 View
  28. Graham-Brown M, Vasilica C, Oates T, Light B, Clausner C, Antonacoloulos A, Chen L, Ormandy P, Barratt J. Study protocol: responding to the needs of patients with IgA nephropathy, a social media approach. Clinical Kidney Journal 2018;11(4):474 View
  29. Zhang R, Eschler J, Reddy M. Online Support Groups for Depression in China: Culturally Shaped Interactions and Motivations. Computer Supported Cooperative Work (CSCW) 2018;27(3-6):327 View
  30. 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
  31. Kim H, Sundar S. Motivating contributions to online forums: can locus of control moderate the effects of interface cues?. Health Communication 2016;31(5):583 View
  32. Zhang T, Cho J, Zhai C. Understanding User Intents in Online Health Forums. IEEE Journal of Biomedical and Health Informatics 2015;19(4):1392 View
  33. Abrahamson J, Rubin V. Discourse structure differences in lay and professional health communication. Journal of Documentation 2012;68(6):826 View
  34. Bateman D, Brady E, Wilkerson D, Yi E, Karanam Y, Callahan C. Comparing Crowdsourcing and Friendsourcing: A Social Media-Based Feasibility Study to Support Alzheimer Disease Caregivers. JMIR Research Protocols 2017;6(4):e56 View
  35. Stonbraker S, Richards S, Halpern M, Bakken S, Schnall R. Priority Topics for Health Education to Support HIV Self‐Management in Limited‐Resource Settings. Journal of Nursing Scholarship 2019;51(2):168 View
  36. Yan L, Sun S, Tan Y. Shared Minds: How Patients Use Collaborative Web-Based Information Sharing. SSRN Electronic Journal 2012 View
  37. Introne J, Erickson I, Semaan B, Goggins S. Designing sustainable online support: Examining the effects of design change in 49 online health support communities. Journal of the Association for Information Science and Technology 2020;71(4):379 View
  38. Anderson L, Spanjol J, Jefferies J, Ostrom A, Nations Baker C, Bone S, Downey H, Mende M, Rapp J. Responsibility and Well-Being: Resource Integration under Responsibilization in Expert Services. Journal of Public Policy & Marketing 2016;35(2):262 View
  39. Lundberg T, Lindström A, Roen K, Hegarty P. From Knowing Nothing to Knowing What, How and Now: Parents’ Experiences of Caring for their Children With Congenital Adrenal Hyperplasia: Table I.. Journal of Pediatric Psychology 2016:jsw001 View
  40. Petrič G, Atanasova S, Kamin T. Ill Literates or Illiterates? Investigating the eHealth Literacy of Users of Online Health Communities. Journal of Medical Internet Research 2017;19(10):e331 View
  41. Zanchetta M, Cognet M, Lam-Kin-Teng M, Dumitriu M, Renaud L, Rhéaume J. From early detection to rehabilitation in the community: reading beyond the blog testimonies of survivors’ quality of life and prostate cancer representation. Health and Quality of Life Outcomes 2016;14(1) View
  42. Holden R, Daley C, Mickelson R, Bolchini D, Toscos T, Cornet V, Miller A, Mirro M. Patient decision-making personas: An application of a patient-centered cognitive task analysis (P-CTA). Applied Ergonomics 2020;87:103107 View
  43. Godbold N. Listening to bodies and watching machines: Developing health information skills, tools and services for people living with chronic kidney disease. Australian Academic & Research Libraries 2013;44(1):14 View
  44. Hewitt-Taylor J, Bond C. What E-patients Want From the Doctor-Patient Relationship: Content Analysis of Posts on Discussion Boards. Journal of Medical Internet Research 2012;14(6):e155 View
  45. Davis J, Zuber K. The Nephrology Interdisciplinary Team: An Education Synergism. Advances in Chronic Kidney Disease 2014;21(4):338 View
  46. Assez N, Gagnayre R. Consensus about cardiac patients and families’ competencies in emergency situations: use of a multi-partite Delphi method. Education Thérapeutique du Patient - Therapeutic Patient Education 2016;8(2):20102 View
  47. Townsend A, Leese J, Adam P, McDonald M, Li L, Kerr S, Backman C. eHealth, Participatory Medicine, and Ethical Care: A Focus Group Study of Patients’ and Health Care Providers’ Use of Health-Related Internet Information. Journal of Medical Internet Research 2015;17(6):e155 View
  48. Sanderson T, Angouri J. ‘I’m an expert in me and I know what I can cope with’: Patient expertise in rheumatoid arthritis. Communication and Medicine 2014;10(3):249 View
  49. Choe E, Duarte M, Suh H, Pratt W, Kientz J. Communicating Bad News: Insights for the Design of Consumer Health Technologies. JMIR Human Factors 2019;6(2):e8885 View
  50. Kennedy C, Powell J, Payne T, Ainsworth J, Boyd A, Buchan I. Active Assistance Technology for Health-Related Behavior Change: An Interdisciplinary Review. Journal of Medical Internet Research 2012;14(3):e80 View
  51. Tapi Nzali M, Bringay S, Lavergne C, Mollevi C, Opitz T. What Patients Can Tell Us: Topic Analysis for Social Media on Breast Cancer. JMIR Medical Informatics 2017;5(3):e23 View
  52. Atanasova S, Kamin T, Petrič G. Exploring the benefits and challenges of health professionals’ participation in online health communities: Emergence of (dis)empowerment processes and outcomes. International Journal of Medical Informatics 2017;98:13 View
  53. Yan L, Yan X, Tan Y, Sun S. Shared Minds: How Patients Use Collaborative Information Sharing via Social Media Platforms. Production and Operations Management 2019;28(1):9 View
  54. Lu Y, Pan T, Deng S. What Drives Patients Affected by Depression to Share in Online Depression Communities? A Social Capital Perspective. Healthcare 2019;7(4):133 View
  55. Caillé Y. Usages des réseaux sociaux par les patients. Soins Cadres 2016;25(100):38 View
  56. Dwyer A, Quinton R, Morin D, Pitteloud N. Identifying the unmet health needs of patients with congenital hypogonadotropic hypogonadism using a web-based needs assessment: implications for online interventions and peer-to-peer support. Orphanet Journal of Rare Diseases 2014;9(1):83 View
  57. Kornfield R, Sarma P, Shah D, McTavish F, Landucci G, Pe-Romashko K, Gustafson D. Detecting Recovery Problems Just in Time: Application of Automated Linguistic Analysis and Supervised Machine Learning to an Online Substance Abuse Forum. Journal of Medical Internet Research 2018;20(6):e10136 View
  58. Fallon E, Driscoll D, Smith T, Richardson K, Portier K. Description, characterization, and evaluation of an online social networking community: the American Cancer Society’s Cancer Survivors Network®. Journal of Cancer Survivorship 2018;12(5):691 View
  59. Chu S, Huang H, Wong W, van Ginneken W, Wu K, Hung M. Quality and clarity of health information on Q&A sites. Library & Information Science Research 2018;40(3-4):237 View
  60. Frost J, Vermeulen I, Beekers N. Anonymity Versus Privacy: Selective Information Sharing in Online Cancer Communities. Journal of Medical Internet Research 2014;16(5):e126 View
  61. Sabee C, Bylund C, Weber J, Sonet E. The Association of Patients’ Primary Interaction Goals with Attributions for their Doctors’ Responses in Conversations about Online Health Research. Journal of Applied Communication Research 2012;40(3):271 View
  62. Lederman R, Wadley G, Gleeson J, Bendall S, Álvarez-Jiménez M. Moderated online social therapy. ACM Transactions on Computer-Human Interaction 2014;21(1):1 View
  63. Evans C, Hamilton R, Tercyak K, Peshkin B, Rabemananjara K, Isaacs C, O’Neill S. Understanding the Needs of Young Women Regarding Breast Cancer Risk Assessment and Genetic Testing: Convergence and Divergence among Patient-Counselor Perceptions and the Promise of Peer Support. Healthcare 2016;4(3):35 View
  64. Tang J, Yu G, Yao X. A Comparative Study of Online Depression Communities in China. International Journal of Environmental Research and Public Health 2020;17(14):5023 View
  65. Tarricone R, Cucciniello M, Armeni P, Petracca F, Desouza K, Hall L, Keefe D. Mobile Health Divide Between Clinicians and Patients in Cancer Care: Results From a Cross-Sectional International Survey. JMIR mHealth and uHealth 2019;7(9):e13584 View
  66. Willis E. The Power of Peers: Applying User-Generated Content to Health Behaviors “Off-Line”. Qualitative Health Research 2018;28(13):2081 View
  67. Shortall O, Green M, Brennan M, Wapenaar W, Kaler J. Exploring expert opinion on the practicality and effectiveness of biosecurity measures on dairy farms in the United Kingdom using choice modeling. Journal of Dairy Science 2017;100(3):2225 View
  68. Woods S, Evans N, Frisbee K. Integrating patient voices into health information for self-care and patient-clinician partnerships: Veterans Affairs design recommendations for patient-generated data applications. Journal of the American Medical Informatics Association 2016;23(3):491 View
  69. Wolf C, Veinot T. Struggling for space and finding my place: An interactionist perspective on everyday use of biomedical information. Journal of the Association for Information Science and Technology 2015;66(2):282 View
  70. Kanthawala S, Vermeesch A, Given B, Huh J. Answers to Health Questions: Internet Search Results Versus Online Health Community Responses. Journal of Medical Internet Research 2016;18(4):e95 View
  71. Huh J, Yetisgen-Yildiz M, Pratt W. Text classification for assisting moderators in online health communities. Journal of Biomedical Informatics 2013;46(6):998 View
  72. Wedderhoff O, Chasiotis A, Rosman T, Mayer A. Unveiling the Subjective Perception of Health Information Sources: A Three-Dimensional Source Taxonomy Based on Similarity Judgements. Frontiers in Communication 2018;3 View
  73. Ma X, Gui X, Fan J, Zhao M, Chen Y, Zheng K. Professional Medical Advice at your Fingertips. Proceedings of the ACM on Human-Computer Interaction 2018;2(CSCW):1 View
  74. Rubenstein E. “Things my doctor never told me”: Bridging information gaps in an online community. Proceedings of the American Society for Information Science and Technology 2012;49(1):1 View
  75. Badiu C, Bonomi M, Borshchevsky I, Cools M, Craen M, Ghervan C, Hauschild M, Hershkovitz E, Hrabovszky E, Juul A, Kim S, Kumanov P, Lecumberri B, Lemos M, Neocleous V, Niedziela M, Djurdjevic S, Persani L, Phan-Hug F, Pignatelli D, Pitteloud N, Popovic V, Quinton R, Skordis N, Smith N, Stefanija M, Xu C, Young J, Dwyer A. Developing and evaluating rare disease educational materials co-created by expert clinicians and patients: the paradigm of congenital hypogonadotropic hypogonadism. Orphanet Journal of Rare Diseases 2017;12(1) View
  76. Giesler J, Keller B, Repke T, Leonhart R, Weis J, Muckelbauer R, Rieckmann N, Müller-Nordhorn J, Lucius-Hoene G, Holmberg C. Effect of a Website That Presents Patients’ Experiences on Self-Efficacy and Patient Competence of Colorectal Cancer Patients: Web-Based Randomized Controlled Trial. Journal of Medical Internet Research 2017;19(10):e334 View
  77. Haldar S, Mishra S, Kim Y, Hartzler A, Pollack A, Pratt W. Use and impact of an online community for hospital patients. Journal of the American Medical Informatics Association 2020;27(4):549 View
  78. Matura L, McDonough A, Aglietti L, Herzog J, Gallant K. A Virtual Community. Clinical Nursing Research 2013;22(2):155 View
  79. Yan L, Tan Y. The Consensus Effect on Shared Treatment Experience in Online Healthcare Communities. SSRN Electronic Journal 2015 View
  80. Millar J. Engaging and Empowering Patients with Consumer eHealth Solutions - Fostering Patient Expertise. SSRN Electronic Journal 2012 View
  81. Muntlin Athlin Å, Brovall M, Wengström Y, Conroy T, Kitson A. Descriptions of fundamental care needs in cancer care-An exploratory study. Journal of Clinical Nursing 2018;27(11-12):2322 View
  82. Allen C, Vassilev I, Kennedy A, Rogers A. The work and relatedness of ties mediated online in supporting long‐term condition self‐management. Sociology of Health & Illness 2020;42(3):579 View
  83. Hartzler A, Weis B, Cahill C, Pratt W, Park A, Backonja U, McDonald D. Design and Usability of Interactive User Profiles for Online Health Communities. ACM Transactions on Computer-Human Interaction 2016;23(3):1 View
  84. 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
  85. Walshe C, Roberts D, Calman L, Appleton L, Croft R, Perez Algorta G, Skevington S, Lloyd-Williams M, Grande G. Peer Mentors for People with Advanced Cancer: Lessons Learnt from Recruiting and Training Peer Mentors for a Feasibility Randomized Controlled Trial. Journal of Cancer Education 2021;36(4):710 View
  86. Andersen T, Langstrup H, Lomborg S. Experiences With Wearable Activity Data During Self-Care by Chronic Heart Patients: Qualitative Study. Journal of Medical Internet Research 2020;22(7):e15873 View
  87. 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
  88. Haldar S, Kim Y, Mishra S, Hartzler A, Pollack A, Pratt W. The Patient Advice System. Proceedings of the ACM on Human-Computer Interaction 2020;4(CSCW2):1 View
  89. Chang Y, Zhang Y, Gwizdka J. The effects of information source and eHealth literacy on consumer health information credibility evaluation behavior. Computers in Human Behavior 2021;115:106629 View
  90. Ferraro G, Loo Gee B, Ji S, Salvador-Carulla L. Lightme: analysing language in internet support groups for mental health. Health Information Science and Systems 2020;8(1) View
  91. Liang O, Chen Y, Bennett D, Yang C. Identifying Self-Management Support Needs for Pregnant Women With Opioid Misuse in Online Health Communities: Mixed Methods Analysis of Web Posts. Journal of Medical Internet Research 2021;23(2):e18296 View
  92. Santana M, Tomkins D. Patient-led use of patient-reported outcome measure in self-Management of a Rotator Cuff Injury. Journal of Patient-Reported Outcomes 2021;5(1) View
  93. Andalibi N, Flood M. Considerations in Designing Digital Peer Support for Mental Health: Interview Study Among Users of a Digital Support System (Buddy Project). JMIR Mental Health 2021;8(1):e21819 View
  94. Bhat K, Kumar N. Sociocultural Dimensions of Tracking Health and Taking Care. Proceedings of the ACM on Human-Computer Interaction 2020;4(CSCW2):1 View
  95. Dehdarirad T, Freer J. Is there alignment amongst scientific literature, news media and patient forums regarding topics?: A study of breast and lung cancer. Online Information Review 2021;ahead-of-print(ahead-of-print) View
  96. Backonja U, Taylor-Swanson L, Miller A, Jung S, Haldar S, Woods N. “There’s a problem, now what’s the solution?”: suggestions for technologies to support the menopausal transition from individuals experiencing menopause and healthcare practitioners. Journal of the American Medical Informatics Association 2021;28(2):209 View
  97. Chen A. Interactions between affect, cognition, and information behavior in the context of fibromyalgia. Journal of the Association for Information Science and Technology 2021 View
  98. Flobak E, Nordby E, Guribye F, Kenter R, Nordgreen T, Lundervold A. Designing Videos With and for Adults With ADHD for an Online Intervention: Participatory Design Study and Thematic Analysis of Evaluation (Preprint). JMIR Mental Health 2021 View

Books/Policy Documents

  1. Hansen H, Street J. Patient Involvement in Health Technology Assessment. View
  2. Zhang Y. Social Web and Health Research. View
  3. Rutledge P. Practical Psychology in Medical Rehabilitation. View
  4. Street J, Farrell L. Patient Involvement in Health Technology Assessment. View
  5. Hartzler A, Huh J. Consumer Health Informatics. View
  6. Muhammad S. Chronic Illness and Long-Term Care. View
  7. Watson J, Guidry-Grimes L. Moral Expertise. View
  8. Lu Y, Zhang Z, Min K, Luo X, He Z. Diversity, Divergence, Dialogue. View
  9. De Meyere D. Digital Health Communications. View