Published on in Vol 21, No 5 (2019): May

Preprints (earlier versions) of this paper are available at, first published .
OpenNotes After 7 Years: Patient Experiences With Ongoing Access to Their Clinicians’ Outpatient Visit Notes

OpenNotes After 7 Years: Patient Experiences With Ongoing Access to Their Clinicians’ Outpatient Visit Notes

OpenNotes After 7 Years: Patient Experiences With Ongoing Access to Their Clinicians’ Outpatient Visit Notes


  1. DesRoches C, Delbanco T, Bell S. Patients Managing Medications and Reading Their Visit Notes. Annals of Internal Medicine 2019;171(10):774 View
  2. Blease C, Delbanco T, Torous J, Ponten M, DesRoches C, Hagglund M, Walker J, Kirsch I. Sharing clinical notes, and placebo and nocebo effects: Can documentation affect patient health?. Journal of Health Psychology 2022;27(1):135 View
  3. Ye Q, Patel R, Khan U, Boren S, Kim M. Evaluation of provider documentation patterns as a tool to deliver ongoing patient‐centred diabetes education and support. International Journal of Clinical Practice 2020;74(3) View
  4. Leveille S, Fitzgerald P, Harcourt K, Dong Z, Bell S, O’Neill S, DesRoches C, Fernandez L, Jackson S, Klein J, Stametz R, Delbanco T, Walker J. Patients Evaluate Visit Notes Written by Their Clinicians: a Mixed Methods Investigation. Journal of General Internal Medicine 2020;35(12):3510 View
  5. Bala S, Keniston A, Burden M. Patient Perception of Plain-Language Medical Notes Generated Using Artificial Intelligence Software: Pilot Mixed-Methods Study. JMIR Formative Research 2020;4(6):e16670 View
  6. Bernaerdt J, Moerenhout T, Devisch I. Vulnerable patients' attitudes towards sharing medical data and granular control in patient portal systems: an interview study. Journal of Evaluation in Clinical Practice 2021;27(2):429 View
  7. Czernik Z, Chang R, Chopra V. A Counterintuitive Tool for Connected Care. Annals of Internal Medicine 2019;171(4):283 View
  8. . Time for Back Pain Patients to Routinely Have Access to Their Doctors' Notes?. The Back Letter 2019;34(7):76 View
  9. Miller D. Transparency in Patient Access to Dermatopathologic Reports. JAMA Dermatology 2020;156(3):252 View
  10. Power K, McCrea Z, White M, Breen A, Dunleavy B, O’Donoghue S, Jacquemard T, Lambert V, El‐Naggar H, Delanty N, Doherty C, Fitzsimons M. The development of an epilepsy electronic patient portal: Facilitating both patient empowerment and remote clinician‐patient interaction in a post‐COVID‐19 world. Epilepsia 2020;61(9):1894 View
  11. Hochheiser H, Valdez R. Human-Computer Interaction, Ethics, and Biomedical Informatics. Yearbook of Medical Informatics 2020;29(01):093 View
  12. Blease C, Salmi L, DesRoches C. Open notes in cancer care: coming soon to patients. The Lancet Oncology 2020;21(9):1136 View
  13. Hägglund M, DesRoches C, Petersen C, Scandurra I. Patients’ access to health records. BMJ 2019:l5725 View
  14. Shucard H, Piepkorn M, Reisch L, Kerr K, Radick A, Wang P, Knezevich S, Barnhill R, Elder D, Elmore J. Dermatopathologists’ Experience With and Perceptions of Patient Online Access to Pathologic Test Result Reports. JAMA Dermatology 2020;156(3):320 View
  15. Blease C, Fernandez L, Bell S, Delbanco T, DesRoches C. Empowering patients and reducing inequities: is there potential in sharing clinical notes?. BMJ Quality & Safety 2020;29(10):1.8 View
  16. Nurgalieva L, Cajander Å, Moll J, Åhlfeldt R, Huvila I, Marchese M. ‘I do not share it with others. No, it’s for me, it’s my care’: On sharing of patient accessible electronic health records. Health Informatics Journal 2020;26(4):2554 View
  17. Parsons Leigh J, Brundin-Mather R, Zjadewicz K, Soo A, Stelfox H. Improving transitions in care from intensive care units: Development and pilot testing of an electronic communication tool for healthcare providers. Journal of Critical Care 2020;56:265 View
  18. Grebe T, Khushf G, Chen M, Bailey D, Brenman L, Williams M, Seaver L. The interface of genomic information with the electronic health record: a points to consider statement of the American College of Medical Genetics and Genomics (ACMG). Genetics in Medicine 2020;22(9):1431 View
  19. DesRoches C, Walker J, Delbanco T. Care Partners and Patient Portals—Faulty Access, Threats to Privacy, and Ample Opportunity. JAMA Internal Medicine 2020;180(6):850 View
  20. Bell S, Delbanco T, Elmore J, Fitzgerald P, Fossa A, Harcourt K, Leveille S, Payne T, Stametz R, Walker J, DesRoches C. Frequency and Types of Patient-Reported Errors in Electronic Health Record Ambulatory Care Notes. JAMA Network Open 2020;3(6):e205867 View
  21. Savitz S, Savitz L, Fleming N, Shah N, Go A. How much can we trust electronic health record data?. Healthcare 2020;8(3):100444 View
  22. Zanaboni P, Kummervold P, Sørensen T, Johansen M. Patient Use and Experience With Online Access to Electronic Health Records in Norway: Results From an Online Survey. Journal of Medical Internet Research 2020;22(2):e16144 View
  23. DesRoches C, Leveille S, Bell S, Dong Z, Elmore J, Fernandez L, Harcourt K, Fitzgerald P, Payne T, Stametz R, Delbanco T, Walker J. The Views and Experiences of Clinicians Sharing Medical Record Notes With Patients. JAMA Network Open 2020;3(3):e201753 View
  24. Salmi L, Dong Z, Yuh B, Walker J, DesRoches C. Open Notes in Oncology: Patient versus Oncology Clinician Views. Cancer Cell 2020;38(6):767 View
  25. Blease C, Walker J, Torous J, O'Neill S. Sharing Clinical Notes in Psychotherapy: A New Tool to Strengthen Patient Autonomy. Frontiers in Psychiatry 2020;11 View
  26. McCrea Z, Power K, Kiersey R, White M, Breen A, Murphy S, Healy L, Kearney H, Dunleavy B, O'Donoghue S, Lambert V, Delanty N, Doherty C, Fitzsimons M. Coproducing health and well-being in partnership with patients, families, and healthcare providers: A qualitative study exploring the role of an epilepsy patient portal. Epilepsy & Behavior 2021;115:107664 View
  27. Willems M, Brandenburg B. Hoe wenselijk is online inzage in het medisch dossier door patiënten?. Huisarts en wetenschap 2020;63(12):43 View
  28. Blease C, Torous J, Hägglund M. Does Patient Access to Clinical Notes Change Documentation?. Frontiers in Public Health 2020;8 View
  29. Jones J, Saeed H, Katz M, Lustberg M, Forster V, Nekhlyudov L. Readdressing the Needs of Cancer Survivors During COVID-19: A Path Forward. JNCI: Journal of the National Cancer Institute 2021;113(8):955 View
  30. Fernández L, Fossa A, Dong Z, Delbanco T, Elmore J, Fitzgerald P, Harcourt K, Perez J, Walker J, DesRoches C. Words Matter: What Do Patients Find Judgmental or Offensive in Outpatient Notes?. Journal of General Internal Medicine 2021;36(9):2571 View
  31. Sarabu C, Lee T, Hogan A, Pageler N. The Value of OpenNotes for Pediatric Patients, Their Families and Impact on the Patient–Physician Relationship. Applied Clinical Informatics 2021;12(01):076 View
  32. Richards S, Carlson K, Matthias T, Birge J. Perception versus reality: Does provider documentation behavior change when clinic notes are shared electronically with patients?. International Journal of Medical Informatics 2021;145:104304 View
  33. van Mens H, van Eysden M, Nienhuis R, van Delden J, de Keizer N, Cornet R. Evaluation of lexical clarification by patients reading their clinical notes: a quasi-experimental interview study. BMC Medical Informatics and Decision Making 2020;20(S10) View
  34. Müller J, Ullrich C, Poss-Doering R. Beyond Known Barriers—Assessing Physician Perspectives and Attitudes Toward Introducing Open Health Records in Germany: Qualitative Study. Journal of Participatory Medicine 2020;12(4):e19093 View
  35. DesRoches C. Healthcare in the new age of transparency. Seminars in Dialysis 2020;33(6):533 View
  36. 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
  37. Delbanco T, Wachenheim D. Open Notes: New Federal Rules Promoting Open and Transparent Communication. The Joint Commission Journal on Quality and Patient Safety 2021;47(4):207 View
  38. Blok A, Amante D, Hogan T, Sadasivam R, Shimada S, Woods S, Nazi K, Houston T. Impact of Patient Access to Online VA Notes on Healthcare Utilization and Clinician Documentation: a Retrospective Cohort Study. Journal of General Internal Medicine 2021;36(3):592 View
  39. Kruithof N, Spreeuwenberg M, Kleijkers S, Bruls B, Gurp E. Zorgen om online inzage in het eigen patiëntendossier. Huisarts en wetenschap 2020;63(12):62 View
  40. Tsai C, Eghdam A, Davoody N, Wright G, Flowerday S, Koch S. Effects of Electronic Health Record Implementation and Barriers to Adoption and Use: A Scoping Review and Qualitative Analysis of the Content. Life 2020;10(12):327 View
  41. Wright J, Leveille S, Chimowitz H, Fossa A, Stametz R, Clarke D, Walker J. Validation of a brief scale to assess ambulatory patients’ perceptions of reading visit notes: a scale development study. BMJ Open 2020;10(10):e034517 View
  42. Blease C, Walker J, DesRoches C, Delbanco T. New U.S. Law Mandates Access to Clinical Notes: Implications for Patients and Clinicians. Annals of Internal Medicine 2021;174(1):101 View
  43. Salmi L, Blease C, Hägglund M, Walker J, DesRoches C. US policy requires immediate release of records to patients. BMJ 2021:n426 View
  44. Nøst T, Faxvaag A, Steinsbekk A. Participants’ views and experiences from setting up a shared patient portal for primary and specialist health services- a qualitative study. BMC Health Services Research 2021;21(1) View
  45. Lalor J, Hu W, Tran M, Wu H, Mazor K, Yu H. Evaluating the Effectiveness of NoteAid in a Community Hospital Setting: Randomized Trial of Electronic Health Record Note Comprehension Interventions With Patients. Journal of Medical Internet Research 2021;23(5):e26354 View
  46. Blease C, Dong Z, Torous J, Walker J, Hägglund M, DesRoches C. Association of Patients Reading Clinical Notes With Perception of Medication Adherence Among Persons With Serious Mental Illness. JAMA Network Open 2021;4(3):e212823 View
  47. Blease C, O'Neill S, Torous J, DesRoches C, Hagglund M. Patient Access to Mental Health Notes. Journal of Nervous & Mental Disease 2021;209(4):265 View
  48. Salmi L, Mansouri S, Taylor L. New federal rule requires open notes: what do clinicians and patients need to know? Insights and suggestions from a neuro-oncologist, a neurosurgeon, and a person living with a brain tumor. Neuro-Oncology Practice 2021;8(3):233 View
  49. Lee J, Miller S, Mezoff E, Screws J, Sauer C, Huang J. The 21st Century CURES Act in Pediatric Gastroenterology: Problems, Solutions, and Preliminary Guidance. Journal of Pediatric Gastroenterology & Nutrition 2021;72(5):700 View
  50. Ralston J, Yu O, Penfold R, Gundersen G, Ramaprasan A, Schartz E. Changes in Clinician Attitudes Toward Sharing Visit Notes: Surveys Pre-and Post-Implementation. Journal of General Internal Medicine 2021;36(11):3330 View
  51. Turvey C, Fuhrmeister L, Klein D, Moeckli J, Howren M, Chasco E. Patient and Provider Experience of Electronic Patient Portals and Secure Messaging in Mental Health Treatment. Telemedicine and e-Health 2022;28(2):189 View
  52. Alkureishi M, Johnson T, Nichols J, Dhodapkar M, Czerwiec M, Wroblewski K, Arora V, Lee W. Impact of an Educational Comic to Enhance Patient-Physician–Electronic Health Record Engagement: Prospective Observational Study. JMIR Human Factors 2021;8(2):e25054 View
  53. Zellmer B, Nacht C, Coller R, Hoonakker P, Smith C, Sklansky D, Dean S, Smith W, Sprackling C, Ehlenfeldt B, Kelly M. BedsideNotes: Sharing Physicians’ Notes With Parents During Hospitalization. Hospital Pediatrics 2021;11(5):503 View
  54. Crucefix A, Fleming A, Lebus C, Slowther A, Fritz Z. Sharing a written medical summary with patients on the post‐admission ward round: A qualitative study of clinician and patient experience. Journal of Evaluation in Clinical Practice 2021;27(6):1235 View
  55. Chen J, Cabudol M, Williams E, Merrill J, Tsui J, Klein J. Perspectives on electronic portal use among patients treated with medications for opioid use disorder in primary care. Journal of Substance Abuse Treatment 2021;126:108463 View
  56. O’Neill S, Blease C, Delbanco T. Open Notes Become Law: A Challenge for Mental Health Practice. Psychiatric Services 2021;72(7):750 View
  57. Blease C, Salmi L, Rexhepi H, Hägglund M, DesRoches C. Patients, clinicians and open notes: information blocking as a case of epistemic injustice. Journal of Medical Ethics 2022;48(10):785 View
  58. Blease C, Salmi L, Hägglund M, Wachenheim D, DesRoches C. COVID-19 and Open Notes: A New Method to Enhance Patient Safety and Trust. JMIR Mental Health 2021;8(6):e29314 View
  59. Valeur H, Lie A, Moen K. Patient Rationales Against the Use of Patient-Accessible Electronic Health Records: Qualitative Study. Journal of Medical Internet Research 2021;23(5):e24090 View
  60. Fisher K, Kennedy K, Bloomstone S, Fukunaga M, Bell S, Mazor K. Can sharing clinic notes improve communication and promote self-management? A qualitative study of patients with COPD. Patient Education and Counseling 2022;105(3):726 View
  61. Cijvat C, Cornet R, Hägglund M. Factors Influencing Development and Implementation of Patients' Access to Electronic Health Records—A Comparative Study of Sweden and the Netherlands. Frontiers in Public Health 2021;9 View
  62. Hägglund M, Scandurra I. User Evaluation of the Swedish Patient Accessible Electronic Health Record: System Usability Scale. JMIR Human Factors 2021;8(3):e24927 View
  63. Piersa A, Laiteerapong N, Ham S, del Castillo F, Shah S, Burnet D, Lee W. Impact of a medical scribe on clinical efficiency and quality in an academic general internal medicine practice. BMC Health Services Research 2021;21(1) View
  64. Park J, Saha S, Chee B, Taylor J, Beach M. Physician Use of Stigmatizing Language in Patient Medical Records. JAMA Network Open 2021;4(7):e2117052 View
  65. Fitzsimons M, Power K, McCrea Z, Kiersey R, White M, Dunleavy B, O'Donoghue S, Lambert V, Delanty N, Doherty C. Democratizing epilepsy care: Utility and usability of an electronic patient portal. Epilepsy & Behavior 2021;122:108197 View
  66. Rexhepi H, Huvila I, Åhlfeldt R, Cajander Å. Cancer patients’ information seeking behavior related to online electronic healthcare records. Health Informatics Journal 2021;27(3):146045822110247 View
  67. Posada J, Potvin H, Cookson C. Opening Up with Open Notes: Writing Notes in the Era of Full Patient Access. Academic Psychiatry 2022;46(2):259 View
  68. Sakumoto M, Khanna R. Using Technology to Enhance Communication. Medical Clinics of North America 2022;106(4):705 View
  69. Leonard S, Zackula R, Wilcher J. Attitudes and Experiences of Clinicians After Mandated Implementation of Open Notes by the 21st Century Cures Act: Survey Study. Journal of Medical Internet Research 2023;25:e42021 View
  70. DesRoches C, Salmi L, Dong Z, Blease C. How do older patients with chronic conditions view reading open visit notes?. Journal of the American Geriatrics Society 2021;69(12):3497 View
  71. Goldkind L, Wolf L, LaMendola W. Data justice: social work and a more just future. Journal of Community Practice 2021;29(3):237 View
  72. Kelly M, Hoonakker P, Nacht C, Smith C, Dean S, Sklansky D, Smith W, Sprackling C, Zellmer B, Coller R. Parent Perspectives on Sharing Pediatric Hospitalization Clinical Notes. Pediatrics 2023;151(1) View
  73. Rodríguez-Fernández J, Loeb J, Hier D. It’s time to change our documentation philosophy: writing better neurology notes without the burnout. Frontiers in Digital Health 2022;4 View
  74. Hägglund M, McMillan B, Whittaker R, Blease C. Patient empowerment through online access to health records. BMJ 2022:e071531 View
  75. Bell S, Dong Z, Desroches C, Hart N, Liu S, Mahon B, Ngo L, Thomas E, Bourgeois F. Partnering with patients and families living with chronic conditions to coproduce diagnostic safety through OurDX: a previsit online engagement tool. Journal of the American Medical Informatics Association 2023 View
  76. Bell S, Bourgeois F, DesRoches C, Dong J, Harcourt K, Liu S, Lowe E, McGaffigan P, Ngo L, Novack S, Ralston J, Salmi L, Schrandt S, Sheridan S, Sokol-Hessner L, Thomas G, Thomas E. Filling a gap in safety metrics: development of a patient-centred framework to identify and categorise patient-reported breakdowns related to the diagnostic process in ambulatory care. BMJ Quality & Safety 2022;31(7):526 View
  77. Turner A, Morris R, McDonagh L, Hamilton F, Blake S, Farr M, Stevenson F, Banks J, Atherton H, Rakhra D, Lasseter G, Feder G, Ziebland S, Hyde E, Powell J, Horwood J. Unintended consequences of patient online access to health records: a qualitative study in UK primary care. British Journal of General Practice 2023;73(726):e67 View
  78. Lear R, Freise L, Kybert M, Darzi A, Neves A, Mayer E. Perceptions of Quality of Care Among Users of a Web-Based Patient Portal: Cross-sectional Survey Analysis. Journal of Medical Internet Research 2022;24(11):e39973 View
  79. Chen J, Baxter S. Applications of natural language processing in ophthalmology: present and future. Frontiers in Medicine 2022;9 View
  80. Hagström J, Blease C, Haage B, Scandurra I, Hansson S, Hägglund M. Views, Use, and Experiences of Web-Based Access to Pediatric Electronic Health Records for Children, Adolescents, and Parents: Scoping Review. Journal of Medical Internet Research 2022;24(11):e40328 View
  81. Shin H, Durocher K, Lo B, Chen S, Ma C, Wiljer D, Strudwick G. Impact of a mental health patient portal on patients’ views of compassion: a mixed-methods study. BMC Digital Health 2023;1(1) View
  82. Krishnan L, Neuss M. Virtuosic craft or clerical labour: the rise of the electronic health record and challenges to physicians’ professional identity (1950–2022). Medical Humanities 2023;49(2):281 View
  83. Brooks J, Zegers C, Sinclair C, Wulff-Burchfield E, Thimmesch A, English D, Nelson-Brantley H. Understanding the Cures Act Information Blocking Rule in cancer care: a mixed methods exploration of patient and clinician perspectives and recommendations for policy makers. BMC Health Services Research 2023;23(1) View
  84. Bentley K, Zuromski K, Fortgang R, Madsen E, Kessler D, Lee H, Nock M, Reis B, Castro V, Smoller J. Implementing Machine Learning Models for Suicide Risk Prediction in Clinical Practice: Focus Group Study With Hospital Providers. JMIR Formative Research 2022;6(3):e30946 View
  85. Gerber D. 21st Century Cures Act: Implementation Without Understanding Implication?. JCO Oncology Practice 2022;18(2):85 View
  86. DesRoches C, Walker J, Delbanco T. US experience with transparent medical records should reassure doctors. BMJ 2022:o2969 View
  87. Lyu H, Gordon W, Huey R, Katz M. Leveraging the 21st Century Cures Act to Improve Cancer Care, Patient Engagement, and Data Collection. JCO Oncology Practice 2022;18(12):788 View
  88. Turer R, DesRoches C, Salmi L, Helmer T, Rosenbloom S. Patient Perceptions of Receiving COVID-19 Test Results via an Online Patient Portal: An Open Results Survey. Applied Clinical Informatics 2021;12(04):954 View
  89. Harkey K, Connor D, Wang H, Kaiser N, Matthews B, Kelz R, Reinke C. View from the Patient Perspective: Mixed-Methods Analysis of Post-Discharge Virtual Visits in a Randomized Controlled Trial. Journal of the American College of Surgeons 2021;233(5):593 View
  90. Kujala S, Hörhammer I, Väyrynen A, Holmroos M, Nättiaho-Rönnholm M, Hägglund M, Johansen M. Patients' Experiences of Web-Based Access to Electronic Health Records in Finland: Cross-sectional Survey. Journal of Medical Internet Research 2022;24(6):e37438 View
  91. Giardina T, Choi D, Upadhyay D, Korukonda S, Scott T, Spitzmueller C, Schuerch C, Torretti D, Singh H. Inviting patients to identify diagnostic concerns through structured evaluation of their online visit notes. Journal of the American Medical Informatics Association 2022;29(6):1091 View
  92. Turer R, Martin K, Courtney D, Diercks D, Chu L, Willett D, Thakur B, Hughes A, Lehmann C, McDonald S. Real-Time Patient Portal Use Among Emergency Department Patients: An Open Results Study. Applied Clinical Informatics 2022;13(05):1123 View
  93. Narindrarangkura P, Boren S, Khan U, Day M, Simoes E, Kim M. SEE-diabetes, a patient-centered diabetes self-management education and support for older adults: Findings and information needs from providers’ perspectives. Diabetes & Metabolic Syndrome: Clinical Research & Reviews 2022;16(9):102582 View
  94. Blease C, Torous J, Dong Z, Davidge G, DesRoches C, Kharko A, Turner A, Jones R, Hägglund M, McMillan B. Patient Online Record Access in English Primary Care: Qualitative Survey Study of General Practitioners’ Views. Journal of Medical Internet Research 2023;25:e43496 View
  95. Winder G, Clifton E. The 21st Century Cures Act and psychosocial electronic documentation in solid organ transplantation: Potential harms and practical strategies. American Journal of Transplantation 2022;22(12):2781 View
  96. Villanueva R, Busis N, Cohen B, Ciccarelli L. The Transformation of Documenting and Coding: Evaluation and Management Codes for Outpatient Neurology Services. CONTINUUM: Lifelong Learning in Neurology 2021;27(6):1790 View
  97. Zanaboni P, Kristiansen E, Lintvedt O, Wynn R, Johansen M, Sørensen T, Fagerlund A. Impact on patient-provider relationship and documentation practices when mental health patients access their electronic health records online: a qualitative study among health professionals in an outpatient setting. BMC Psychiatry 2022;22(1) View
  98. Hagström J, Blease C, Haage B, Scandurra I, Hansson S, Hägglund M. Use of and Experiences With Online Access to Electronic Health Records for Parents, Children, and Adolescents: Protocol for a Scoping Review. JMIR Research Protocols 2022;11(6):e36158 View
  99. Cajander Å, Huvila I, Salminen-Karlsson M, Lind T, Scandurra I. Effects of patient accessible electronic health records on nurses’ work environment: a survey study on expectations in Sweden. BMJ Open 2022;12(11):e059188 View
  100. Kim E. Patient’s Clinical User Experience in Gastroenterology. The Korean Journal of Gastroenterology 2022;80(6):241 View
  101. Bärkås A, Scandurra I, Rexhepi H, Blease C, Cajander Å, Hägglund M. Patients’ Access to Their Psychiatric Notes: Current Policies and Practices in Sweden. International Journal of Environmental Research and Public Health 2021;18(17):9140 View
  102. BELL S, BOURGEOIS F, DONG J, GILLESPIE A, NGO L, READER T, THOMAS E, DESROCHES C. Patient Identification of Diagnostic Safety Blindspots and Participation in “Good Catches” Through Shared Visit Notes. The Milbank Quarterly 2022;100(4):1121 View
  103. Müller J, Weinert L, Svensson L, Rivinius R, Kreusser M, Heinze O. Mobile Access to Medical Records in Heart Transplantation Aftercare: Mixed-Methods Study Assessing Usability, Feasibility and Effects of a Mobile Application. Life 2022;12(8):1204 View
  104. Rexhepi H, Moll J, Huvila I, Åhlfeldt R. Do you want to receive bad news through your patient accessible electronic health record? A national survey on receiving bad news in an era of digital health. Health Informatics Journal 2021;27(3):146045822110358 View
  105. Shucard H, Muller E, Johnson J, Walker J, Elmore J, Payne T, Berman J, Jackson S. 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 Services Research and Managerial Epidemiology 2022;9:233339282210803 View
  106. Hägglund M, Scandurra I. Usability of the Swedish Accessible Electronic Health Record: Qualitative Survey Study. JMIR Human Factors 2022;9(2):e37192 View
  107. Wright J, Volkman J, Leveille S, Amante D. Predictors of Online Patient Portal Use Among a Diverse Sample of Emerging Adults: Cross-sectional Survey. JMIR Formative Research 2022;6(2):e33356 View
  108. Walker J, Leveille S, Kriegel G, Lin C, Liu S, Payne T, Harcourt K, Dong Z, Fitzgerald P, Germak M, Markson L, Jackson S, Shucard H, Elmore J, Delbanco T. Patients Contributing to Visit Notes: Mixed Methods Evaluation of OurNotes. Journal of Medical Internet Research 2021;23(11):e29951 View
  109. Khasawneh A, Kratzke I, Adapa K, Marks L, Mazur L. Effect of Notes' Access and Complexity on OpenNotes' Utility. Applied Clinical Informatics 2022;13(05):1015 View
  110. Blease C. Sharing online clinical notes with patients: implications for nocebo effects and health equity. Journal of Medical Ethics 2023;49(1):14 View
  111. Bernstein J. Not the Last Word: Seeing Ourselves as Doctors See Us. Clinical Orthopaedics & Related Research 2022;480(9):1653 View
  112. Blanchard K, Stoff B. Open notes and dermatopathology reports: A pathway to increasing patient autonomy, not confusion. Journal of the American Academy of Dermatology 2022;86(5):1186 View
  113. Narindrarangkura P, Boren S, Khan U, Day M, Simoes E, Kim M. SEE-Diabetes, a patient-centered diabetes self-management education and support for older adults: Findings and information needs from patients’ perspectives. Primary Care Diabetes 2022;16(3):395 View
  114. Rust L. Notes at your fingertips: Open note considerations regarding pediatric and adolescent care. Current Problems in Pediatric and Adolescent Health Care 2021;51(11):101102 View
  115. Radell J, Tatum J, Lin C, Davidson R, Pell J, Sieja A, Wu A. Risks and rewards of increasing patient access to medical records in clinical ophthalmology using OpenNotes. Eye 2022;36(10):1951 View
  116. Blease C, DesRoches C. Open notes in patient care: confining deceptive placebos to the past?. Journal of Medical Ethics 2022;48(8):572 View
  117. Marx R. Me and My Electronic Health Record. Journal of Patient Experience 2021;8:237437352110387 View
  118. Kassam I, Shin H, Durocher K, Lo B, Shen N, Mehta R, Sockalingam S, Wiljer D, Gratzer D, Sequeira L, Strudwick G. “I think it's something that we should lean in to”: The use of OpenNotes in Canadian psychiatric care contexts by clinicians. DIGITAL HEALTH 2022;8:205520762211441 View
  119. Blease C, McMillan B, Salmi L, Davidge G, Delbanco T. Adapting to transparent medical records: international experience with “open notes”. BMJ 2022:e069861 View
  120. Verosky A, Leonard L, Quinn C, Vemuru S, Warncke E, Himelhoch B, Huynh V, Wolverton D, Jaiswal K, Ahrendt G, Sams S, Lin C, Cumbler E, Schulick R, Tevis S. Patient comprehension of breast pathology report terminology: The need for patient-centered resources. Surgery 2022;172(3):831 View
  121. Leonard L, Himelhoch B, Huynh V, Wolverton D, Jaiswal K, Ahrendt G, Sams S, Cumbler E, Schulick R, Tevis S. Patient and clinician perceptions of the immediate release of electronic health information. The American Journal of Surgery 2022;224(1):27 View
  122. Jackson S, Shucard H, Liao J, Bell S, Fossa A, Payne T, Reisch L, Radick A, DesRoches C, Fitzgerald P, Leveille S, Walker J, Elmore J. Care partners reading patients’ visit notes via patient portals: Characteristics and perceptions. Patient Education and Counseling 2022;105(2):290 View
  123. Henderson C, Nahmias Z, Fossa A, Barnes E, Huang S. Analysis of patient preferences on patient–provider interactions through the OpenNotes online portal in dermatology. International Journal of Women's Dermatology 2021;7(5):793 View
  124. Fagerlund A, Kristiansen E, Simonsen R. Experiences from using patient accessible electronic health records - a qualitative study within Sámi mental health patients in Norway. International Journal of Circumpolar Health 2022;81(1) View
  125. Newman-Griffis D, Hurwitz M, McKernan G, Houtrow A, Dicianno B, Geisler B. A roadmap to reduce information inequities in disability with digital health and natural language processing. PLOS Digital Health 2022;1(11):e0000135 View
  126. Tai-Seale M, Rosen R, Ruo B, Hogarth M, Longhurst C, Lander L, Walker A, Stults C, Chan A, Mazor K, Garber L, Millen M. Implementation of Patient Engagement Tools in Electronic Health Records to Enhance Patient-Centered Communication: Protocol for Feasibility Evaluation and Preliminary Results. JMIR Research Protocols 2021;10(8):e30431 View
  127. Schwarz J, Bärkås A, Blease C, Collins L, Hägglund M, Markham S, Hochwarter S. Sharing Clinical Notes and Electronic Health Records With People Affected by Mental Health Conditions: Scoping Review. JMIR Mental Health 2021;8(12):e34170 View
  128. Kainiemi E, Vehko T, Kyytsönen M, Hörhammer I, Kujala S, Jormanainen V, Heponiemi T. The Factors Associated With Nonuse of and Dissatisfaction With the National Patient Portal in Finland in the Era of COVID-19: Population-Based Cross-sectional Survey. JMIR Medical Informatics 2022;10(4):e37500 View
  129. Woollard L, Gorman R, Rosenfelt D. Improving patient informed consent for haemophilia gene therapy: the case for change. Therapeutic Advances in Rare Disease 2021;2:263300402110472 View
  130. Arvisais-Anhalt S, Ratanawongsa N, Sadasivaiah S. Laboratory Results Release to Patients under the 21st Century Cures Act: The Eight Stakeholders Who Should Care. Applied Clinical Informatics 2023;14(01):45 View
  131. Lin J, Huber B, Amir O, Gehrmann S, Ramirez K, Ochoa K, Asch S, Gajos K, Grosz B, Sanders L. Barriers and Facilitators to the Implementation of Family-Centered Technology in Complex Care: Feasibility Study. Journal of Medical Internet Research 2022;24(8):e30902 View
  132. Yang K, Lau C, Lau W, Nambudiri V, Watson A. Patient Perspectives on Clinic Note Transparency Within Dermatology. JAMA Dermatology 2023;159(4):456 View
  133. Lam B, Dupee D, Gerard M, Bell S. A Patient-Centered Approach to Writing Ambulatory Visit Notes in the Cures Act Era. Applied Clinical Informatics 2023;14(01):199 View
  134. Steitz B, Turer R, Lin C, MacDonald S, Salmi L, Wright A, Lehmann C, Langford K, McDonald S, Reese T, Sternberg P, Chen Q, Rosenbloom S, DesRoches C. Perspectives of Patients About Immediate Access to Test Results Through an Online Patient Portal. JAMA Network Open 2023;6(3):e233572 View
  135. Nakikj D, Kreda D, Gehlenborg N. New Ways for Patients to Make Sense of Their Electronic Health Record Data Using the Discovery Web Application: Think-Aloud Evaluation Study. JMIR Formative Research 2023;7:e41346 View
  136. Childers C, Marron J, Meyer E, Abel G. Clinical ethics consultation documentation in the era of open notes. BMC Medical Ethics 2023;24(1) View
  137. Rotholz S, Lin C. “I don’t think it should take you three days to tell me my baby is dead.” A case of fetal demise: unintended consequences of immediate release of information. Journal of the American Medical Informatics Association 2023;30(7):1301 View
  138. Davidge G, Brown L, Lyons M, Blease C, French D, van Staa T, McMillan B. Primary care staff’s views and experience of patients’ online access to their electronic health record: a qualitative exploration. British Journal of General Practice 2023;73(731):e418 View
  139. Bedgood M, Rabbani N, Brown C, Goldstein R, Carlson J, Steinberg E, Powell A, Pageler N, Morse K. The Prevalence of Confidential Content in Adolescent Progress Notes Prior to the 21st Century Cures Act Information Blocking Mandate. Applied Clinical Informatics 2023;14(02):337 View
  140. Dong Z, Leveille S, Lewis D, Walker J. People with diabetes who read their clinicians’ visit notes: Behaviors and attitudes. Chronic Illness 2023:174239532311718 View
  141. Raisa A, Alpert J, Bylund C, Jarad-Fodeh S. Identifying the mechanisms of patient-centred communication in secure messages between clinicians and cancer patients. PEC Innovation 2023;2:100161 View
  142. Sanders J, Blanch-Hartigan D, Ericson J, Tarbi E, Rizzo D, Gramling R, van Vliet L. Methodological innovations to strengthen evidence-based serious illness communication. Patient Education and Counseling 2023;114:107790 View
  143. Blease C, Torous J, McMillan B, Hägglund M, Mandl K. Generative Language Models and Open Notes: Exploring the Promise and Limitations. JMIR Medical Education 2024;10:e51183 View
  144. Hägglund M, Kharko A, Hagström J, Bärkås A, Blease C, Cajander Å, DesRoches C, Fagerlund A, Haage B, Huvila I, Hörhammer I, Kane B, Klein G, Kristiansen E, Luks K, Moll J, Muli I, Raphaug E, Rexhepi H, Riggare S, Ross P, Scandurra I, Simola S, Soone H, Wang B, Ghorbanian Zolbin M, Åhlfeldt R, Kujala S, Johansen M. The NORDeHEALTH 2022 Patient Survey: Cross-Sectional Study of National Patient Portal Users in Norway, Sweden, Finland, and Estonia. Journal of Medical Internet Research 2023;25:e47573 View
  145. Rabbani N, Bedgood M, Brown C, Steinberg E, Goldstein R, Carlson J, Pageler N, Morse K. A Natural Language Processing Model to Identify Confidential Content in Adolescent Clinical Notes. Applied Clinical Informatics 2023;14(03):400 View
  146. Sisk B, Lin S, Balls-Berry J, Servin A, Mack J. Identifying contributors to disparities in patient access of online medical records: examining the role of clinician encouragement. JAMIA Open 2023;6(3) View
  147. Bell S, Harcourt K, Dong J, DesRoches C, Hart N, Liu S, Ngo L, Thomas E, Bourgeois F. Patient and family contributions to improve the diagnostic process through the OurDX electronic health record tool: a mixed method analysis. BMJ Quality & Safety 2023:bmjqs-2022-015793 View
  148. Simola S, Hörhammer I, Xu Y, Bärkås A, Fagerlund A, Hagström J, Holmroos M, Hägglund M, Johansen M, Kane B, Kharko A, Scandurra I, Kujala S. Patients’ Experiences of a National Patient Portal and Its Usability: Cross-Sectional Survey Study. Journal of Medical Internet Research 2023;25:e45974 View
  149. Sprackling C, Kieren M, Nacht C, Moreno M, Wooldridge A, Kelly M. Adolescent Access to Clinicians' Notes: Adolescent, Parent, and Clinician Perspectives. Journal of Adolescent Health 2024;74(1):155 View
  150. Lo B, Shin H, Kemp J, Munnery M, Chen S, Ma C, Jankowicz D, Mehta R, Harris A, Sakal M, Pundit R, Chung K, Kuziemsky C, Rossetti S, Strudwick G. Shifting Mindsets: The Impact of a Patient Portal on Functioning and Recovery in a Mental Health Setting. The Canadian Journal of Psychiatry 2023 View
  151. Wang B, Kristiansen E, Fagerlund A, Zanaboni P, Hägglund M, Bärkås A, Kujala S, Cajander Å, Blease C, Kharko A, Huvila I, Kane B, Johansen M. Users’ Experiences With Online Access to Electronic Health Records in Mental and Somatic Health Care: Cross-Sectional Study. Journal of Medical Internet Research 2023;25:e47840 View
  152. Dukhanin V, Wolff J, Salmi L, Harcourt K, Wachenheim D, Byock I, Gonzales M, Niehus D, Parshley M, Reay C, Epstein S, Mohile S, Farrell T, Supiano M, Jajodia A, DesRoches C. Co-Designing an Initiative to Increase Shared Access to Older Adults’ Patient Portals: Stakeholder Engagement. Journal of Medical Internet Research 2023;25:e46146 View
  153. Blease C. Open AI meets open notes: surveillance capitalism, patient privacy and online record access. Journal of Medical Ethics 2024;50(2):84 View
  154. Schwarz J, Meier-Diedrich E, Neumann K, Heinze M, Eisenmann Y, Thoma S. Reasons for Acceptance or Rejection of Online Record Access Among Patients Affected by a Severe Mental Illness: Mixed Methods Study of Patients’ Views (Preprint). JMIR Mental Health 2023 View
  155. Kuluski K, Asselbergs M, Baker R, Burns K, Bruno F, Saragosa M, MacLaurin A, Flintoft V, Jeffs L. ‘Safety is about partnership’: Safety through the lens of patients and caregivers. Health Expectations 2024;27(1) View
  156. Nacht C, Jacobson N, Shiyanbola O, Smith C, Hoonakker P, Coller R, Dean S, Sklansky D, Smith W, Sprackling C, Kelly M. Perception of Physicians’ Notes Among Parents of Different Health Literacy Levels. Hospital Pediatrics 2024;14(2):108 View
  157. Blease C, Kharko A, Dong Z, Jones R, Davidge G, Hagglund M, Turner A, DesRoches C, McMillan B. Experiences and opinions of general practitioners with patient online record access: an online survey in England. BMJ Open 2024;14(1):e078158 View
  158. Galchutt P. Single-Item Instruments to Measure Aspects of Whole Person Care for an Inpatient Palliative Care Chaplain's Clinical Note: An Examination of Tools. Illness, Crisis & Loss 2024;32(3):402 View
  159. Hagström J, Åhlfeldt R, Blease C, Cajander Å, Rexhepi H, Moll J, Kane B, Scandurra I, Hägglund M. Security and Privacy of Online Record Access: A Survey of Adolescents' Views and Experiences in Sweden. Journal of Adolescent Health 2024 View
  160. Chmielewski M, Meyer M. Discussions With End Users to Inform the Vision for a Shared Care Record in Ontario: Qualitative Interview Study. Online Journal of Public Health Informatics 2024;16:e51231 View
  161. McCallie K, Balasundaram M, Sarabu C. Family Perception of OpenNotes in the Neonatal Intensive Care Unit. Applied Clinical Informatics 2024;15(01):170 View
  162. Hagström J, Blease C, Scandurra I, Moll J, Cajander Å, Rexhepi H, Hägglund M. Adolescents’ reasons for accessing their health records online, perceived usefulness and experienced provider encouragement: a national survey in Sweden. BMJ Paediatrics Open 2024;8(1):e002258 View
  163. Eng K, Johnston K, Cerda I, Kadakia K, Mosier-Mills A, Vanka A. A Patient-Centered Documentation Skills Curriculum for Preclerkship Medical Students in an Open Notes Era. MedEdPORTAL 2024 View
  164. Kharko A, Buergler S, Bärkås A, Hägglund M, Gaab J, Fagerlund A, Locher C, Blease C. Open notes in psychotherapy: An exploratory mixed methods survey of psychotherapy students in Switzerland. DIGITAL HEALTH 2024;10 View
  165. Moll J, Scandurra I, Bärkås A, Blease C, Hägglund M, Hörhammer I, Kane B, Kristiansen E, Ross P, Åhlfeldt R, Klein G. Contextual Factors of Patients' Access to Electronic Health Records in Four European Countries: A Socio-Technical Cross-Country Analysis (Preprint). Journal of Medical Internet Research 2023 View
  166. Chu S, Sisk B, Kolmar A, Malone J. Open Notes Experiences of Parents in the Pediatric ICU. Pediatrics 2024;153(5) View
  167. Swanson K, He S, Calvano J, Chen D, Telvizian T, Jiang L, Chong P, Schwell J, Mak G, Lee J, Tariq A. Biomedical text readability after hypernym substitution with fine-tuned large language models. PLOS Digital Health 2024;3(4):e0000489 View
  168. Turer R, McDonald S, Lehmann C, Thakur B, Dutta S, Taylor R, Rose C, Frisch A, Feterik K, Norquist C, Baker C, Nielson J, Cha D, Kwan B, Dameff C, Killeen J, Hall M, Doerning R, Rosenbloom S, Distaso C, Steitz B. Real-Time Electronic Patient Portal Use Among Emergency Department Patients. JAMA Network Open 2024;7(5):e249831 View
  169. Salmi L, Peereboom D, Dorr D, Graham L, Wolff J, DesRoches C. Viewpoint: Patient portals fail to collect structured information about who else is involved in a person’s care (Preprint). Journal of Medical Internet Research 2023 View
  170. Lam K, Leung C, Soomro Z, Wathoo C, Weathers S. Perspectives from neuro-oncology providers on patient access to electronic records: a survey study. CNS Oncology 2024;13(1) View
  171. Salmi L, Hubbard J, McFarland D. When Bad News Comes Through the Portal: Strengthening Trust and Guiding Patients When They Receive Bad Results Before Their Clinicians. American Society of Clinical Oncology Educational Book 2024;44(3) View
  172. Schwarz J, Hoetger C, Pluschke L, Muehlensiepen F, Schneider M, Thoma S, Esch T. Psychiatrists’ perceptions of conditions and consequences associated with the implementation of open notes: qualitative investigation. BMC Psychiatry 2024;24(1) View

Books/Policy Documents

  1. Karimi P, Ballard K, Vazirani P, Jorigay R, Martin-Hammond A. Pervasive Computing Technologies for Healthcare. View
  2. Wong C, Jackson S. The Patient-Centered Approach to Medical Note-Writing. View
  3. Isaac M, Leyde S. The Patient-Centered Approach to Medical Note-Writing. View
  4. Leyde S, Isaac M. The Patient-Centered Approach to Medical Note-Writing. View