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Appl Clin Inform 2023; 14(02): 254-257
DOI: 10.1055/s-0043-1767685
Invited Editorial

The Voice of the Patient and the Electronic Health Record

Thomas H. Payne
1   Department of Medicine, University of Washington School of Medicine, Seattle, Washington, United States
,
Christoph U. Lehmann
2   Clinical Informatics Center, University of Texas Southwestern Medical Center, Dallas, Texas, United States
,
Alina K. Zatzick
1   Department of Medicine, University of Washington School of Medicine, Seattle, Washington, United States
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Abstract

The patient's voice, which we define as the words the patient uses found in notes and messages and other sources, and their preferences for care and its outcomes, is too small a part of the electronic health record (EHR). To address this shortcoming will require innovation, research, funding, perhaps architectural changes to commercial EHRs, and that we address barriers that have resulted in this state, including clinician burden and financial drivers for care. Advantages to greater patient voice may accrue to many groups of EHR users and to patients themselves. For clinicians, the patient's voice, including symptoms, is invaluable in identifying new serious illness that cannot be detected by screening tests, and as an aid to accurate diagnosis. Informaticians benefit from greater patient voice in the EHR because it provides clues not found elsewhere that aid diagnostic decision support, predictive analytics, and machine learning. Patients benefit when their treatment priorities and care outcomes considered in treatment decisions. What patient voice there is in the EHR today can be found in locations not usually used by researchers. Increasing the patient voice needs be accomplished in equitable ways available to people with less access to technology and whose primary language is not well supported by EHR tools and portals. Use of direct quotations, while carrying potential for harm, permits the voice to be recorded unfiltered. If you are a researcher or innovator, collaborate with patient groups and clinicians to create new ways to capture the patient voice, and to leverage it for good.

Protection of Human and Animal Subjects

This article does not involve human subjects and was not reviewed by the University of Washington Human Subjects Division for that reason.




Publication History

Received: 15 November 2022

Accepted: 25 February 2023

Article published online:
29 March 2023

© 2023. Thieme. All rights reserved.

Georg Thieme Verlag KG
Rüdigerstraße 14, 70469 Stuttgart, Germany

 

  • References

  • 1 Linnet Olesen M, Jørgensen R. Impact of the person-centred intervention guided self-determination across healthcare settings-an integrated review. Scand J Caring Sci 2023; 37 (01) 37-59
    CrossrefPubMedGoogle Scholar
  • 2 Payne TH, Keller C, Arora P. et al. Electronic progress notes writing practices and preferences of those who read them: a descriptive study. J Med Internet Res 2021; 23 (10) e30165
    CrossrefPubMedGoogle Scholar
  • 3 Goff BA, Mandel LS, Melancon CH, Muntz HG. Frequency of symptoms of ovarian cancer in women presenting to primary care clinics. JAMA 2004; 291 (22) 2705-2712
    CrossrefPubMedGoogle Scholar
  • 4 U.S. Preventive Services Task Force. Ovarian Cancer: Screening. Accessed February 11, 2023, at: https://www.uspreventiveservicestaskforce.org/uspstf/recommendation/ovarian-cancer-screening
    PubMedGoogle Scholar
  • 5 Gandhi JS. Rapid response to: William Osler: A Life in Medicine. BMJ 2000; 321: 1087
    PubMedGoogle Scholar
  • 6 Venktaramana V, Loh EKY, Wong CJW. et al. A systematic scoping review of communication skills training in medical schools between 2000 and 2020. Med Teach 2022; 44 (09) 997-1006
    CrossrefPubMedGoogle Scholar
  • 7 Bennett R, DeGuzman PB, LeBaron V, Wilson D, Jones RA. Exploration of shared decision making in oncology within the United States: a scoping review. Support Care Cancer 2022; 31 (01) 94
    CrossrefPubMedGoogle Scholar
  • 8 National Quality Forum. Patient-Reported Outcomes. Accessed January 6, 2023, at: https://www.qualityforum.org/ Projects/n-r/ Patient-Reported_Outcomes/Patient-Reported_Outcomes.aspx
    PubMedGoogle Scholar
  • 9 Epstein RM, Street Jr RL. The values and value of patient-centered care. Ann Fam Med 2011; 9 (02) 100-103
    CrossrefPubMedGoogle Scholar
  • 10 Lehmann CU, Petersen C, Bhatia H, Berner ES, Goodman KW. Advance directives and code status information exchange: a consensus proposal for a minimum set of attributes. Camb Q Healthc Ethics 2019; 28 (01) 178-185
    CrossrefPubMedGoogle Scholar
  • 11 Medford RJ, Saleh SN, Sumarsono A, Perl TM, Lehmann CU. An “Infodemic”: leveraging high-volume twitter data to understand early public sentiment for the coronavirus disease 2019 outbreak. Open Forum Infect Dis 2020; 7 (07) ofaa258
    CrossrefPubMedGoogle Scholar
  • 12 Saleh SN, Lehmann CU, McDonald SA, Basit MA, Medford RJ. Understanding public perception of coronavirus disease 2019 (COVID-19) social distancing on Twitter. Infect Control Hosp Epidemiol 2021; 42 (02) 131-138
    CrossrefPubMedGoogle Scholar
  • 13 Saleh SN, Lehmann CU, Medford RJ. Early crowdfunding response to the COVID-19 pandemic: cross-sectional study. J Med Internet Res 2021; 23 (02) e25429
    CrossrefPubMedGoogle Scholar
  • 14 Lanier HD, Diaz MI, Saleh SN, Lehmann CU, Medford RJ. Analyzing COVID-19 disinformation on Twitter using the hashtags #scamdemic and #plandemic: retrospective study. PLoS One 2022; 17 (06) e0268409
    CrossrefPubMedGoogle Scholar
  • 15 Wilson AE, Lehmann CU, Saleh SN, Hanna J, Medford RJ. Social media: a new tool for outbreak surveillance. Antimicrob Steward Healthc Epidemiol 2021; 1 (01) e50
    CrossrefPubMedGoogle Scholar
  • 16 Sinsky C, Colligan L, Li L. et al. Allocation of physician time in ambulatory practice: a time and motion study in 4 specialties. Ann Intern Med 2016; 165 (11) 753-760
    CrossrefPubMedGoogle Scholar
  • 17 Frintner MP, Kaelber DC, Kirkendall ES, Lourie EM, Somberg CA, Lehmann CU. The effect of electronic health record burden on pediatricians' work-life balance and career satisfaction. Appl Clin Inform 2021; 12 (03) 697-707
    Article in Thieme ConnectPubMedGoogle Scholar
  • 18 OpenNotes. OurNotes for Health Professionals: Creating Notes With Patients. Accessed February 6, 2023, at: https://www.opennotes.org/ournotes-professionals/
    PubMedGoogle Scholar
  • 19 Walker J, Leveille S, Kriegel G. et al. Patients contributing to visit notes: mixed methods evaluation of OurNotes. J Med Internet Res 2021; 23 (11) e29951
    CrossrefPubMedGoogle Scholar
  • 20 Kumah-Crystal YA, Stein PM, Chen Q. et al. Before-Visit Questionnaire: a tool to augment communication and decrease provider documentation burden in pediatric diabetes. Appl Clin Inform 2021; 12 (05) 969-978
    Article in Thieme ConnectPubMedGoogle Scholar
  • 21 Kumah-Crystal YA, Pirtle CJ, Whyte HM, Goode ES, Anders SH, Lehmann CU. Electronic health record interactions through voice: a review. Appl Clin Inform 2018; 9 (03) 541-552
    Article in Thieme ConnectPubMedGoogle Scholar
  • 22 Beach MC, Saha S. Quoting patients in clinical notes: first, do no harm. Ann Intern Med 2021; 174 (10) 1454-1455
    CrossrefPubMedGoogle Scholar
  • 23 Baxter SL, Saseendrakumar BR, Cheung M. et al. Association of electronic health record Inbasket message characteristics with physician burnout. JAMA Netw Open 2022; 5 (11) e2244363
    CrossrefPubMedGoogle Scholar
  • 24 Sinsky CA, Shanafelt TD, Ripp JA. The electronic health record inbox: recommendations for relief. J Gen Intern Med 2022; 37 (15) 4002-4003
    CrossrefPubMedGoogle Scholar
  • 25 Rittenberg E, Liebman JB, Rexrode KM. Primary care physician gender and electronic health record workload. J Gen Intern Med 2022; 37 (13) 3295-3301
    CrossrefPubMedGoogle Scholar
  • 26 Matulis JC, McCoy R, Liu SK. Moving away from chaos: intentional and adaptive management of the non-visit care river. J Gen Intern Med 2023; 38 (03) 784-788
    CrossrefPubMedGoogle Scholar
  • 27 Di Tosto G, Walker DM, Sieck CJ. et al. Examining the relationship between health literacy, health numeracy, and patient portal use. Appl Clin Inform 2022; 13 (03) 692-699
    Article in Thieme ConnectPubMedGoogle Scholar
  • 28 Zoorob D, Hasbini Y, Chen K. et al. Ageism in healthcare technology: the older patients' aspirations for improved online accessibility. JAMIA Open 2022; 5 (03) ooac061
    CrossrefPubMedGoogle Scholar
  • 29 Shucard H, Muller E, Johnson J. et al. Clinical use of an electronic pre-visit questionnaire soliciting patient visit goals and interim history: a retrospective comparison between safety-net and non-safety-net clinics. Health Serv Res Manag Epidemiol 2022; 9: 23 333928221080336
    PubMedGoogle Scholar
  • 30 Early J, Hernandez A. Digital disenfranchisement and COVID-19: broadband Internet access as a social determinant of health. Health Promot Pract 2021; 22 (05) 605-610
    CrossrefPubMedGoogle Scholar
  • 31 Petersen C, Berner ES, Cardillo A. et al. AMIA's code of professional and ethical conduct 2022. J Am Med Inform Assoc 2022; 30 (01) 3-7
    CrossrefPubMedGoogle Scholar