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DOI: 10.1055/s-0041-1723022
Patients Are Knowledge Workers in the Clinical Information Space
Funding This study was not funded.![](https://www.thieme-connect.de/media/10.1055-s-00035026/202101/lookinside/thumbnails/10-1055-s-0041-1723022_200158r-1.jpg)
Abstract
Background Limited research exists on patient knowledge/cognition or “getting inside patients' heads.” Because patients possess unique and privileged knowledge, clinicians need this information to make patient-centered and coordinated treatment planning decisions. To achieve patient-centered care, we characterize patient knowledge and contributions to the clinical information space.
Methods and Objectives In a theoretical overview, we explore the relevance of patient knowledge to care provision, apply historical perspectives of knowledge acquisition to patient knowledge, propose a representation of patient knowledge types across the continuum of care, and include illustrative vignettes about Mr. Jones. We highlight how the field of human factors (a core competency of health informatics) provides a perspective and methods for eliciting and characterizing patient knowledge.
Conclusion Patients play a vital role in the clinical information space by possessing and sharing unique knowledge relevant to the clinical picture. Without a patient's contributions, the clinical picture of the patient is incomplete. A human factors perspective informs patient-centered care and health information technology solutions to support clinical information sharing.
Keywords
patient knowledge - human factors - health informatics - patient-centered care - knowledge - cognition - patient careProtection of Human and Animal Subjects
No human subjects were involved in this study.
Publication History
Received: 05 August 2020
Accepted: 04 December 2020
Article published online:
24 February 2021
© 2021. Thieme. All rights reserved.
Georg Thieme Verlag KG
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References
- 1 Holden RJ, Cornet VP, Valdez RS. Patient ergonomics: 10-year mapping review of patient-centered human factors. Appl Ergon 2020; 82: 102972
- 2 Valenta AL, Berner ES, Boren SA. et al. AMIA Board white paper: AMIA 2017 core competencies for applied health informatics education at the master's degree level. J Am Med Inform Assoc 2018; 25 (12) 1657-1668
- 3 HealthIT.gov. Patient-generated health data. Published March 21, 2018. Accessed October 22, 2020 at: https://www.healthit.gov/topic/scientific-initiatives/patient-generated-health-data
- 4 Corbin J, Strauss A. Managing chronic illness at home: three lines of work. Qual Sociol 1985; 8 (03) 224-247
- 5 Hollnagel E, Woods DD. Joint Cognitive Systems: Patterns in Cognitive Systems Engineering. Boca Raton, FL: CRC Press; 2006
- 6 Klein G. Naturalistic decision making. Hum Factors 2008; 50 (03) 456-460
- 7 Klein GA. A Recognition-Primed Decision (RPD) Model of Rapid Decision Making. New York, NY: Ablex Publishing Corporation; 1993 . Accessed May 26, 2017 at: https://pdfs.semanticscholar.org/0672/092ecc507fb41d81e82d2986cf86c4bff14f.pdf
- 8 Benner P. From novice to expert. Menlo Park. . Published online 1984. Accessed December 31, 2020 at: http://files.eric.ed.gov/fulltext/ED384695.pdf#page=130
- 9 Dreyfus SE, Dreyfus HL. A five-stage model of the mental activities involved in directed skill acquisition. California Univ Berkeley Operations Research Center, DTIC Document. Available at: https://apps.dtic.mil/dtic/tr/fulltext/u2/a084551.pdf
- 10 Ericsson KA, Krampe RT, Tesch-Römer C. The role of deliberate practice in the acquisition of expert performance. Psychol Rev 1993; 100 (03) 363-406
- 11 Holden RJ, Carayon P, Gurses AP. et al. SEIPS 2.0: a human factors framework for studying and improving the work of healthcare professionals and patients. Ergonomics 2013; 56 (11) 1669-1686
- 12 Khan A, Coffey M, Litterer KP. et al; the Patient and Family Centered I-PASS Study Group. Families as partners in hospital error and adverse event surveillance. JAMA Pediatr 2017; 171 (04) 372-381
- 13 Khan A, Furtak SL, Melvin P, Rogers JE, Schuster MA, Landrigan CP. Parent-reported errors and adverse events in hospitalized children. JAMA Pediatr 2016; 170 (04) e154608-e154608
- 14 Weiner SJ, Schwartz A. Contextual errors in medical decision making: overlooked and understudied. Acad Med 2016; 91 (05) 657-662
- 15 Easton P, Entwistle VA, Williams B. Health in the ‘hidden population’ of people with low literacy. A systematic review of the literature. BMC Public Health 2010; 10: 459
- 16 Berkman ND, Sheridan SL, Donahue KE, Halpern DJ, Crotty K. Low health literacy and health outcomes: an updated systematic review. Ann Intern Med 2011; 155 (02) 97-107
- 17 McDonald M, Shenkman L. Health literacy and health outcomes of adults in the United States: implications for providers. Internet J Allied Health Sci Pract 2018;16(04)
- 18 Lippa KD, Feufel MA, Robinson FE, Shalin VL. Navigating the decision space: shared medical decision making as distributed cognition. Qual Health Res 2017; 27 (07) 1035-1048
- 19 Kennedy I. Patients are experts in their own field. BMJ 2003; 326 (7402): 1276-1277
- 20 Boulet LP. The expert patient and chronic respiratory diseases. Can Respir J 2016; 2016: 9454506
- 21 Expert Patient. A New Approach to Chronic Disease Management for the 21st Century. London: DoH; 2001
- 22 Lorig K. Partnerships between expert patients and physicians. Lancet 2002; 359 (9309): 814-815
- 23 Shaw J, Baker M. “Expert patient”—dream or nightmare?. BMJ 2004; 328 (7442): 723-724
- 24 Tattersall RL. The expert patient: a new approach to chronic disease management for the twenty-first century. Clin Med (Lond) 2002; 2 (03) 227-229
- 25 Benner P. Using the Dreyfus model of skill acquisition to describe and interpret skill acquisition and clinical judgment in nursing practice and education. Bull Sci Technol Soc 2004; 24 (03) 188-199
- 26 Ericsson KA. Deliberate practice and acquisition of expert performance: a general overview. Acad Emerg Med 2008; 15 (11) 988-994
- 27 Ericsson KA, Hoffman RR, Kozbelt A, Williams AM. The Cambridge Handbook of Expertise and Expert Performance. Cambridge: Cambridge University Press; 2018
- 28 Militello LG, Anders S, Downs SM. et al. Understanding how primary care clinicians make sense of chronic pain. Cogn Technol Work 2018; 20 (04) 575-584
- 29 Militello LG, Diiulio JB, Borders MR. et al. Evaluating a modular decision support application for colorectal cancer screening. Appl Clin Inform 2017; 8 (01) 162-179
- 30 Militello LG, Rattray NA, Flanagan ME. et al. “Workin' on our night moves”: how residents prepare for shift handoffs. Jt Comm J Qual Patient Saf 2018; 44 (08) 485-493
- 31 Militello LG, Savoy A, Porter B. et al. Hidden complexities in information flow between primary and specialty care clinics. Cogn Technol Work 2018; 20 (04) 565-574
- 32 Reber AS. Implicit learning and tacit knowledge. J Exp Psychol Gen 1989; 118 (03) 219
- 33 Lippa KD, Klein HA, Shalin VL. Everyday expertise: cognitive demands in diabetes self-management. Hum Factors 2008; 50 (01) 112-120
- 34 Holden RJ, Daley CN, Mickelson RS. et al. Patient decision-making personas: an application of a patient-centered cognitive task analysis (P-CTA). Appl Ergon 2020; 87: 103107
- 35 Polanyi M. The logic of tacit inference. Philosophy 1966; 41 (155) 1-18
- 36 Holden RJ, Schubert CC, Mickelson RS. The patient work system: an analysis of self-care performance barriers among elderly heart failure patients and their informal caregivers. Appl Ergon 2015; 47: 133-150
- 37 Holden RJ, Valdez RS, Schubert CC, Thompson MJ, Hundt AS. Macroergonomic factors in the patient work system: examining the context of patients with chronic illness. Ergonomics 2017; 60 (01) 26-43
- 38 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; 22 (01) 2-10
- 39 Valdez RS, Holden RJ, Novak LL, Veinot TC. Technical infrastructure implications of the patient work framework. J Am Med Inform Assoc 2015; 22 (e1): e213-e215
- 40 Ozkaynak M, Valdez R, Holden RJ, Weiss J. Infinicare framework for integrated understanding of health-related activities in clinical and daily-living contexts. Health Syst (Basingstoke) 2017; 7 (01) 66-78
- 41 Daley C, Al-Abdulmunem M, Holden RJ. Knowledge among patients with heart failure: A narrative synthesis of qualitative research. Heart Lung 2019; 48 (06) 477-485
- 42 Drucker PF. The Landmarks of Tomorrow: On Economic and Social Progress in the Twentieth-Century. Portsmouth, NH: Heinemann; 1959
- 43 Sanders EB-N. Information, inspiration and co-creation. Paper presented at: Proceedings of the 6th International Conference of the European Academy of Design. University of the Arts Bremen, Germany; March 29–31, 2005
- 44 Bodenheimer T, Lorig K, Holman H, Grumbach K. Patient self-management of chronic disease in primary care. JAMA 2002; 288 (19) 2469-2475
- 45 Pollack AH, Backonja U, Miller AD. et al. Closing the gap: Supporting patients' transition to self-management after hospitalization. Proc SIGCHI Conf Hum Factor Comput Syst 2016; 5324-5336
- 46 Carayon P, Wooldridge A, Hoonakker P, Hundt AS, Kelly MM. SEIPS 3.0: Human-centered design of the patient journey for patient safety. Appl Ergon 2020; 84: 103033
- 47 Collins English Dictionary. Spaghetti junction definition and meaning. 2020 . Accessed October 23, 2020 at: https://www.collinsdictionary.com/us/dictionary/english/spaghetti-junction
- 48 Eskildsen NB, Joergensen CR, Thomsen TG. et al. Patient empowerment: a systematic review of questionnaires measuring empowerment in cancer patients. Acta Oncol 2017; 56 (02) 156-165
- 49 Coulter A, Ellins J. Effectiveness of strategies for informing, educating, and involving patients. BMJ 2007; 335 (7609): 24-27
- 50 American Cancer Society. Learn about cancer. Published 2018. Accessed July 2, 2018 at: https://www.cancer.org/cancer.html
- 51 American Heart Association. High blood pressure. Published 2021. Accessed January 21, 2021 at: https://www.heart.org/en/health-topics/high-blood-pressure
- 52 Or CKL, Karsh B-T. A systematic review of patient acceptance of consumer health information technology. J Am Med Inform Assoc 2009; 16 (04) 550-560
- 53 Brown JS, Duguid P. Knowledge and organization: a social-practice perspective. Organ Sci 2001; 12 (02) 198-213
- 54 Sindrilaru A, Neckermann V, Eigentler T. et al. Self-detection frequency and recognition patterns in medium to high-risk cutaneous melanoma patients. J Dtsch Dermatol Ges 2017; 15 (01) 61-67
- 55 Polinski JM, Kesselheim AS, Frolkis JP, Wescott P, Allen-Coleman C, Fischer MA. A matter of trust: patient barriers to primary medication adherence. Health Educ Res 2014; 29 (05) 755-763
- 56 Blenkinsopp A, Bradley C. Patients, society, and the increase in self medication. BMJ 1996; 312 (7031): 629-632
- 57 Katz D, Tengekyon AJ, Kahan NR, Calderon-Margalit R. Patient and physician characteristics affect adherence to screening mammography: a population-based cohort study. PLoS One 2018; 13 (03) e0194409
- 58 Lee Y, Aurshina A, Lee AJ. et al. Routine colonoscopy, diabetic eye care, mammogram and pap smear screening in vascular surgery patients. Vascular 2018; 26 (04) 372-377
- 59 Berry DL, Blonquist TM, Nayak MM, Grenon N, Momani TG, McCleary NJ. Self-care support for patients with gastrointestinal cancer: iCancerHealth. Appl Clin Inform 2018; 9 (04) 833-840
- 60 Ancker JS, Send A, Hafeez B, Osorio SN, Abramson E. Health IT usability focus section: adapting EHR-based medication instructions to comply with plain language guidance-a randomized experiment. Appl Clin Inform 2017; 8 (04) 1127-1143
- 61 Peute LW, Knijnenburg SL, Kremer LC, Jaspers MWM. A concise and practical framework for the development and usability evaluation of patient information websites. Appl Clin Inform 2015; 6 (02) 383-399
- 62 Turvey CL, Klein DM, Witry M. et al. Patient education for consumer-mediated HIE: a pilot randomized controlled trial of the department of veterans affairs Blue Button. Appl Clin Inform 2016; 7 (03) 765-776
- 63 Riggare S. Patient researchers - the missing link?. Nat Med 2020; 26 (10) 1507-1507
- 64 Feliciano JT, Salmi L, Blotner C. et al. Brain tumor discussions on Twitter (#BTSM): social network analysis. J Med Internet Res 2020; 22 (10) e22005
- 65 Katz MS, Staley AC, Attai DJ. A history of #BCSM and insights for patient-centered online interaction and engagement. J Patient Cent Res Rev 2020; 7 (04) 304-312
- 66 Callard F, Perego E. How and why patients made Long Covid. Soc Sci Med 2020; 113426
- 67 Papautsky EL, Holden RJ, Valdez RS, Ernst K, Kushniruk A. The patient in patient safety: unique perspectives of researchers who are also patients. In: Proceedings of the International Symposium on Human Factors and Ergonomics in Health Care. Vol 9. Los Angeles, CA: SAGE Publications; 2020: 292-296
- 68 Lippa KD, Klein HA. Portraits of patient cognition: how patients understand diabetes self-care. Can J Nurs Res 2008; 40 (03) 80-95
- 69 Lippa KD, Klein HA, Shalin VL. Everyday expertise: cognitive demands in diabetes selfmanagement. Hum Factors 2008; 50 (01) 112-120
- 70 Petersen C, Austin RR, Backonja U. et al. Citizen science to further precision medicine: from vision to implementation. JAMIA Open 2019; 3 (01) 2-8
- 71 Polanyi M. Personal Knowledge: Towards a Post-Critical Philosophy. Chicago, IL: University of Chicago Press; 1958
- 72 Glaser R. Education and thinking: the role of knowledge. Am Psychol 1984; 39 (02) 93-104