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

Personal Health Records, Patient-Accessible Electronic Health Records, Patient Portals (586) Participatory Medicine & E-Patients (781)

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

Preprints (earlier versions) of this paper are available at https://preprints.jmir.org/preprint/13876, 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

Authors of this article:

Jan Walker1, 2 Author Orcid Image ;   Suzanne Leveille1, 3 Author Orcid Image ;   Sigall Bell1, 2 Author Orcid Image ;   Hannah Chimowitz1 Author Orcid Image ;   Zhiyong Dong1 Author Orcid Image ;   Joann G Elmore4 Author Orcid Image ;   Leonor Fernandez1, 2 Author Orcid Image ;   Alan Fossa1 Author Orcid Image ;   Macda Gerard1 Author Orcid Image ;   Patricia Fitzgerald1 Author Orcid Image ;   Kendall Harcourt1 Author Orcid Image ;   Sara Jackson5 Author Orcid Image ;   Thomas H Payne5, 6 Author Orcid Image ;   Jocelyn Perez1 Author Orcid Image ;   Hannah Shucard5 Author Orcid Image ;   Rebecca Stametz7 Author Orcid Image ;   Catherine DesRoches1, 2 Author Orcid Image ;   Tom Delbanco1, 2 Author Orcid Image
Article Authors Cited by (199) Tweetations (165) Metrics

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  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 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 2024;20(1):173 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 2024;33(9):597 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 2024;69(3):217 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. JMIR Mental Health 2024;11:e51126 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;75(5):730 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. Sociotechnical Cross-Country Analysis of Contextual Factors That Impact Patients’ Access to Electronic Health Records in 4 European Countries: Framework Evaluation Study. Journal of Medical Internet Research 2024;26:e55752 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
  173. Deeb M, Gangadhar A, Rabindranath M, Rao K, Brudno M, Sidhu A, Wang B, Bhat M. The emerging role of generative artificial intelligence in transplant medicine. American Journal of Transplantation 2024;24(10):1724 View
  174. Hägglund M, Kharko A, Bärkås A, Blease C, Cajander Å, DesRoches C, Fagerlund A, Hagström J, Huvila I, Hörhammer I, Kane B, Klein G, Kristiansen E, Moll J, Muli I, Rexhepi H, Riggare S, Ross P, Scandurra I, Simola S, Soone H, Wang B, Ghorbanian Zolbin M, Åhlfeldt R, Kujala S, Johansen M. A Nordic Perspective on Patient Online Record Access and the European Health Data Space. Journal of Medical Internet Research 2024;26:e49084 View
  175. Stoffel M, Luu H, Krasowski M. Laboratory Informatics Approaches to Improving Care for Gender- Diverse Patients. Clinics in Laboratory Medicine 2024;44(4):575 View
  176. You J, Leung T, Pandita D, Sakumoto M. Primary Care Informatics: Vitalizing the Bedrock of Health Care. Journal of Medical Internet Research 2024;26:e60081 View
  177. Wise A. For Whom the Note Scrolls. Neurology Education 2024;3(3) View
  178. Schwarz J, Neumann K, Meier-Diedrich E, Mühlensiepen F, Hochwarter S, Blease C. Psychotherapists’ views on open notes: An online survey from Germany. DIGITAL HEALTH 2024;10 View
  179. Thomas K, Bailey C. The 21st Century Cures Act: More Harm Than Good for Survivors of Intimate Partner Violence?. Violence Against Women 2024 View
  180. Shah S, Bedgood M, Devon-Sand A, Dolphin-Dempsey C, Cherukuri V, Weng K, Lin S, Sharp C. Effect of an Electronic Health Record-Based Intervention on Documentation Practices. Applied Clinical Informatics 2024;15(04):771 View
  181. Muli I, Cajander Å, Hvitfeldt H, Lagerros Y, Söderberg D, Sjöblom L, Dahlgren A, Bertilson B, Farrokhnia N, Amer-Wåhlin I, Taloyan M, Hägglund M. To read or not to read – A cross-sectional study of Swedish primary care patients’ adoption of patient accessible electronic health records. DIGITAL HEALTH 2024;10 View
  182. Huvila I, Rexhepi H, Moll J, Ghorbanian Zolbin M, Blease C, Bärkås A, Åhlfeldt R, Hagström J, Kane B, Scandurra I, Hägglund M, Klein G, Wang B, Kharko A. Affordance trajectories and the usefulness of online records access among older adults in Sweden. DIGITAL HEALTH 2024;10 View
  183. Chuang E, Richardson A, Boulil Z, Kuelbs C, Huang J. Disparities in Patient Portal Activation and Usage at a Large Pediatric Academic Institution. Journal of Racial and Ethnic Health Disparities 2024 View
  184. Kim H, Lee J, Kim S, Kim D. Service Design and Evaluation of OpenNotes for Craniofacial Deformity Management in Patients and their Caregivers. Healthcare Informatics Research 2024;30(4):333 View
  185. Schmidt S, Boulton A, Butler B, Fazio T. Exploring Patient, Proxy, and Clinician Perspectives on the Value and Impact of an Inpatient Portal: A Reflexive Thematic Analysis. JMIR Human Factors 2024;11:e52703 View
  186. Kariotis T, Prictor M, Gray K, Chang S. Patient Accessible Electronic Health Records and Information Practices in Mental Healthcare Contexts: A Scoping Review (Preprint). Journal of Medical Internet Research 2023 View
  187. Vanka A, Johnston K, Delbanco T, DesRoches C, Garcia A, Salmi L, Blease C. Guidelines for Patient-Centered Documentation in the Era of Open Notes: A Qualitative Study (Preprint). JMIR Medical Education 2024 View
  188. Meier-Diedrich E, Dahling V, Esch T, Hägglund M, Heinze M, Hochwarter S, Wagener M, Schwarz J. Pilotierung und Evaluation einer partizipativen, digitalen Akte für gerontopsychiatrische Patienten und ihre Care-Partner. Nervenheilkunde 2024;43(12):681 View
  189. Floyd S, Sutton J, Okon M, McCarthy M, Fisher L, Judkins B, Reynolds Z, Kennedy A. Assessing Physician and Patient Agreement on whether Patient Outcomes Captured in Clinical Progress Notes Reflect Treatment Success: A Cross-sectional Study (Preprint). Journal of Participatory Medicine 2024 View
  190. Wurster F, Meier-Diedrich E, Demirer I, DesRoches C, Goldberg N, Hägglund M, Herrmann C, Karbach U, Purohit A, Schrader T, Schwarz J. Online-Zugang zu klinischen Behandlungsnotizen für ambulant versorgte Patienten (Studienprotokoll zur OpenNOTES-Studie). Nervenheilkunde 2024;43(12):714 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
  5. Mannebäck E, Åhlfeldt R. Human Aspects of Information Security and Assurance. View