Jan Walker, RN, MBA; Suzanne G. Leveille, PhD, RN; Long Ngo, PhD; Elisabeth Vodicka, BA; Jonathan D. Darer, MD, MPH; Shireesha Dhanireddy, MD; Joann G. Elmore, MD, MPH; Henry J. Feldman, MD; Marc J. Lichtenfeld, PhD; Natalia Oster, MPH; James D. Ralston, MD, MPH; Stephen E. Ross, MD; Tom Delbanco, MD
Grant Support: By The Robert Wood Johnson Foundation's Pioneer Portfolio (grant 65921 to Ms. Walker and Dr. Delbanco), the Drane Family Fund, and the Koplow Charitable Foundation.
Potential Conflicts of Interest: Disclosures can be viewed at www.acponline.org/authors/icmje/ConflictOfInterestForms.do?msNum=M11-0962.
Reproducible Research Statement:Study protocol, statistical code, and data set: Not available.
Corresponding Author: Jan Walker, RN, MBA, Beth Israel Deaconess Medical Center, Harvard Medical School, 330 Brookline Avenue, Boston, MA 02215; e-mail, email@example.com.
Current Author Addresses: Ms. Walker and Drs. Ngo, Feldman, and Delbanco: Beth Israel Deaconess Medical Center, Harvard Medical School, 330 Brookline Avenue, Boston, MA 02215.
Dr. Leveille: College of Nursing and Health Sciences, University of Massachusetts Boston, 100 Morrissey Boulevard, Boston, MA 02125.
Ms. Vodicka, Drs. Dhanireddy and Elmore, and Ms. Oster: Harborview Medical Center, University of Washington School of Medicine, 325 Ninth Avenue, Seattle, WA 98104.
Drs. Darer and Lichtenfeld: Geisinger Health System, 100 North Academy Avenue, Danville, PA 17822.
Dr. Ralston: Group Health Research Institute, Group Health Cooperative, 1730 Minor Avenue, Suite 1600, Seattle, WA 98101.
Dr. Ross: University of Colorado Health Sciences Center, 12631 East 17th Avenue, Aurora, CO 80045.
Author Contributions: Conception and design: J. Walker, S.G. Leveille, J.D. Darer, J.G. Elmore, H.J. Feldman, J.D. Ralston, S.E. Ross, T. Delbanco.
Analysis and interpretation of the data: J. Walker, S.G. Leveille, L. Ngo, J.G. Elmore, J.D. Ralston, S.E. Ross, T. Delbanco.
Drafting of the article: J. Walker, S.G. Leveille, L. Ngo, J.D. Ralston, S.E. Ross, T. Delbanco.
Critical revision of the article for important intellectual content: J. Walker, S.G. Leveille, L. Ngo, E. Vodicka, J.G. Elmore, J.D. Ralston, S.E. Ross, T. Delbanco.
Final approval of the article: J. Walker, S.G. Leveille, L. Ngo, E. Vodicka, J.D. Darer, S. Dhanireddy, J.G. Elmore, H.J. Feldman, M.J. Lichtenfeld, N. Oster, J.D. Ralston, S.E. Ross, T. Delbanco.
Provision of study materials or patients: J. Walker, S.G. Leveille, E. Vodicka, J.D. Darer, S. Dhanireddy, J.G. Elmore, M.J. Lichtenfeld, N. Oster, J.D. Ralston, S.E. Ross, T. Delbanco.
Statistical expertise: S.G. Leveille, L. Ngo.
Obtaining of funding: J. Walker, T. Delbanco.
Administrative, technical, or logistic support: E. Vodicka, H.J. Feldman, M.J. Lichtenfeld, N. Oster.
Collection and assembly of data: J. Walker, S.G. Leveille, E. Vodicka, H.J. Feldman, M.J. Lichtenfeld, N. Oster.
This article has been corrected. The original version (PDF) is appended to this article as a supplement.
Little is known about what primary care physicians (PCPs) and patients would expect if patients were invited to read their doctors' office notes.
To explore attitudes toward potential benefits or harms if PCPs offered patients ready access to visit notes.
The PCPs and patients completed surveys before joining a voluntary program that provided electronic links to doctors' notes.
Primary care practices in 3 U.S. states.
Participating and nonparticipating PCPs and adult patients at primary care practices in Massachusetts, Pennsylvania, and Washington.
Doctors' and patients' attitudes toward and expectations of open visit notes, their ideas about the potential benefits and risks, and demographic characteristics.
110 of 114 participating PCPs (96%), 63 of 140 nonparticipating PCPs (45%), and 37 856 of 90 203 patients (42%) completed surveys. Overall, 69% to 81% of participating PCPs across the 3 sites and 92% to 97% of patients thought open visit notes were a good idea, compared with 16% to 33% of nonparticipating PCPs. Similarly, participating PCPs and patients generally agreed with statements about potential benefits of open visit notes, whereas nonparticipating PCPs were less likely to agree. Among participating PCPs, 74% to 92% anticipated improved communication and patient education, in contrast to 45% to 67% of nonparticipating PCPs. More than one half of participating PCPs (50% to 58%) and most nonparticipating PCPs (88% to 92%) expected that open visit notes would result in greater worry among patients; far fewer patients concurred (12% to 16%). Thirty-six percent to 50% of participating PCPs and 83% to 84% of nonparticipating PCPs anticipated more patient questions between visits. Few PCPs (0% to 33%) anticipated increased risk for lawsuits. Patient enthusiasm extended across age, education, and health status, and 22% anticipated sharing visit notes with others, including other doctors.
Access to electronic patient portals is not widespread, and participation was limited to patients using such portals. Response rates were higher among participating PCPs than nonparticipating PCPs; many participating PCPs had small patient panels.
Among PCPs, opinions about open visit notes varied widely in terms of predicting the effect on their practices and benefits for patients. In contrast, patients expressed considerable enthusiasm and few fears, anticipating both improved understanding and more involvement in care. Sharing visit notes has broad implications for quality of care, privacy, and shared accountability.
The Robert Wood Johnson Foundation's Pioneer Portfolio, Drane Family Fund, and Koplow Charitable Foundation.
Electronic portals are beginning to provide patients with access to portions of their health records.
In this survey, most physicians who planned to participate in a pilot program that provided patients with electronic access to their office notes anticipated benefits to their patients. Physicians who chose not to participate in the pilot program more often worried about potential harms to patients. Patients of both participating and nonparticipating physicians expected overall benefits more frequently than harms.
The survey was conducted among a selected group of physicians and patients at 3 institutions and does not reflect real-world experience.
Further study is needed to assess the benefits and harms of patients' access to their physicians' office notes.
Table 1. Survey Response Rates Among PCPs and Their Patients, According to Participation in OpenNotes
Table 2. Characteristics of PCPs Who Responded to the Survey, by Study Site
Table 3. Characteristics of Patients Who Responded to the Survey, by Study Site
Proportion of PCPs and patients who agreed or somewhat agreed with statements about the potential benefits of open visit notes for patients, by study site.
Appendix Tables 1 and 2 show the wording of the questions and exact values. BIDMC = Beth Israel Deaconess Medical Center; GHS = Geisinger Health System; HMC = Harborview Medical Center; PCP = primary care physician.
Appendix Table 1. Proportion of PCPs Who Agreed or Somewhat Agreed With Statements About the Potential Benefits and Risks of Open Visit Notes, by Participation Status
Appendix Table 2. Proportion of Patients Who Agreed or Somewhat Agreed With Statements About the Potential Benefits and Risks of Open Visit Notes, by Study Site and Patient Characteristics
Proportion of PCPs and patients who agreed or somewhat agreed with statements about the potential harms of open visit notes to patients, by study site.
Table 4. PCP Survey Respondents' Expectations of the Impact of Open Visit Notes on Their Practice
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Rohit, Kalia, Resident Physician
December 21, 2011
Inviting patients to read doctors notes
Inviting patients to read doctors notes would definitely increase the questions between visits, but will also increase worrying by the patient. In my short experience in the outpatient clinics, I have had few patients who wanted to read the notes i was typing on my computer as they were giving interval history. Almost everytime after the patient looked at the notes, they had more questions and few did not like the format. Few patients who were IV drug users did not want to have it documented on their chart that they were IVDU, even after it was explained that their information is confidential. Therefore, when inviting patient to read their records, may theorectically seem to be the right thing to do as it may increase patient awareness and the amount of questions they ask, it can also lead to worsening of doctor-patient relationship and worrying by the patients.
Stephen, Strum, MD, FACP
Ashland Community Hospital
January 10, 2012
Drs. Walker et al invited patients to read the MD notes via the OpenNotes project. Their paper is not entirely clear as to what medical content other than the primary care practitioners (PCP) office notes were made available. Was documentation of patient review of other medical data via Internet portals part of this study? Were PCP notes handwritten or typed (dictated)? Was there any review of the quality of the PCP notes? How can anyone assess value of this kind of interaction without an assessment of the quality of the PCP input to the patient. Too often, in my experience, a review of medical notes from outside practices display suboptimal to grossly negligent medical evaluation and treatment. I believe that the Walker et al publication is a very tentative step involving sharing part or all of the medical record with the patient. In 2012, with all the technical advances in computing, we should be far beyond this level of interaction.
Here is a brief overview of what I have done in the last 9 years of my medical practice.
I am a board certified internist and medical oncologist. I left a lucrative practice in Los Angeles to semi-retire in Oregon. The demand for my services was so intense that I initiated a concierge practice in which I created an EHR (electronic health record) which was totally shared with the patient via the use of email as well as DropBox. All medical records were reviewed and abstracted to a Word document that was color coded, contained hyperlinked sections e.g. basic info, key lists regarding diagnoses, Summary, detailed chronology of medical events and recommendations for all medical team--including the patient, and other features.
Using this approach, the patient became an integral part of the equation for optimal outcomes. Such simple issues as patients listing all medications and supplements with doses for each enhanced medical care. Showing medical issues that remained "active" by highlights versus un- highlighting resolved issues indicated the degree of patient commitment to getting better, and/or to the success of the practitioner's treatments. A separate Word document entitled Pro-Active Integrative Care (PIC) listed key items within the medical history, physical, imaging, and laboratory that showed the date of all studies with color coding of the result based on excellent (green), of concern (blue) and seriously abnormal (red) and needing immediate attention. This acted as a reminder for both patient and physician as to what needed attention. For example, if the patient's last metabolic panel was abnormal it was shown with the date colored blue or red depending on the degree of abnormality. If another panel was due to be done, the word "NEED" would be typed into the cell next to the last date entry.
The patient's perception of their care and their status was enhanced significantly by such an approach. These electronic files were shared with the patient with every alteration of the file and also sent to all members of the patient's medical team. Nothing was kept from the patient-- the prime recipient of medical care and the person paying directly or indirectly for this care.
I would be glad to freely share these Word document templates with any interested health care practitioners or patients.
Stephen B. Strum, MD, FACP firstname.lastname@example.org
Walker J, Leveille SG, Ngo L, et al. Inviting Patients to Read Their Doctors' Notes: Patients and Doctors Look Ahead: Patient and Physician Surveys. Ann Intern Med. 2011;155:811–819. doi: https://doi.org/10.7326/0003-4819-155-12-201112200-00003
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Published: Ann Intern Med. 2011;155(12):811-819.
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