Tom Delbanco, MD (*); Jan Walker, RN, MBA (*); Sigall K. Bell, MD; Jonathan D. Darer, MD, MPH; Joann G. Elmore, MD, MPH; Nadine Farag, MS; Henry J. Feldman, MD; Roanne Mejilla, MPH; Long Ngo, PhD; James D. Ralston, MD, MPH; Stephen E. Ross, MD; Neha Trivedi, BS; Elisabeth Vodicka, BA; Suzanne G. Leveille, PhD, RN
Acknowledgment: The authors thank Elaine Bianco, BSN; Carolyn Conti, BS; Christopher Dries, BA; James I. Hoath, PhC; Margaret Jeddry; Jing Ji, MS; J. Andrew Markiel, PhD; Lawrence Markson, MD, MPH; Natalia Oster, MPH; Lisa M. Reich, PhD; Joan Topper, BS; Qiang Wang, MD; and Clara De La Cruz Watral, MBA, for invaluable contributions to this project. They also thank the many patients and doctors who both took a chance and participated actively in OpenNotes.
Grant Support: All investigators were supported by The Robert Wood Johnson Foundation's Pioneer Portfolio grant 65921. Dr. Delbanco and Ms. Walker were also supported by the Drane Family Fund and the Richard and Florence Koplow Charitable Foundation. Dr. Elmore was also supported by the National Cancer Institute (K05 CA 104699).
Potential Conflicts of Interest: Disclosures can be viewed at www.acponline.org/authors/icmje/ConflictOfInterestForms.do?msNum=M12-0737.
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, Boston, MA 02215; e-mail, firstname.lastname@example.org.
Current Author Addresses: Dr. Delbanco, Ms. Walker, Dr. Bell, Ms. Farag, Dr. Feldman, Ms. Mejilla, Dr. Ngo, and Ms. Trivedi: Beth Israel Deaconess Medical Center, Harvard Medical School, Boston, MA 02215.
Dr. Darer: Geisinger Health System, Danville, PA 17822.
Dr. Elmore and Ms. Vodicka: Harborview Medical Center, University of Washington School of Medicine, Seattle, WA 98104.
Dr. Ralston: Group Health Research Institute, Group Health Cooperative, Seattle, WA 98101.
Dr. Ross: University of Colorado, Aurora, CO 80045.
Dr. Leveille: College of Nursing and Health Sciences, University of Massachusetts, Boston, MA 02125.
Author Contributions: Conception and design: T. Delbanco, J. Walker, J.D. Darer, J.G. Elmore, H.J. Feldman, J.D. Ralston, S.E. Ross, S.G. Leveille.
Analysis and interpretation of the data: T. Delbanco, J. Walker, S.K. Bell, J.G. Elmore, R. Mejilla, L. Ngo, J.D. Ralston, S.E. Ross, S.G. Leveille.
Drafting of the article: T. Delbanco, J. Walker, S.G. Leveille.
Critical revision of the article for important intellectual content: T. Delbanco, J. Walker, S.K. Bell, J.G. Elmore, R. Mejilla, L. Ngo, J.D. Ralston, S.E. Ross, S.G. Leveille.
Final approval of the article: T. Delbanco, J. Walker, S.K. Bell, J.D. Darer, J.G. Elmore, N. Farag, H.J. Feldman, R. Mejilla, L. Ngo, J.D. Ralston, S.E. Ross, N. Trivedi, E. Vodicka, S.G. Leveille.
Provision of study materials or patients: T. Delbanco, J. Walker, S.K. Bell, J.D. Darer, J.G. Elmore, N. Farag, L. Ngo, J.D. Ralston, S.E. Ross, N. Trivedi, E. Vodicka, S.G. Leveille.
Statistical expertise: R. Mejilla, L. Ngo, S.G. Leveille.
Obtaining of funding: T. Delbanco, J. Walker.
Administrative, technical, or logistic support: N. Farag, H.J. Feldman, N. Trivedi, E. Vodicka.
Collection and assembly of data: J. Walker, N. Farag, H.J. Feldman, R. Mejilla, N. Trivedi, E. Vodicka, S.G. Leveille.
This article has been corrected. The original version (PDF) is appended to this article as a Supplement.
Little information exists about what primary care physicians (PCPs) and patients experience if patients are invited to read their doctors' office notes.
To evaluate the effect on doctors and patients of facilitating patient access to visit notes over secure Internet portals.
Quasi-experimental trial of PCPs and patient volunteers in a year-long program that provided patients with electronic links to their doctors' notes.
Primary care practices at Beth Israel Deaconess Medical Center (BIDMC) in Massachusetts, Geisinger Health System (GHS) in Pennsylvania, and Harborview Medical Center (HMC) in Washington.
105 PCPs and 13 564 of their patients who had at least 1 completed note available during the intervention period.
Portal use and electronic messaging by patients and surveys focusing on participants' perceptions of behaviors, benefits, and negative consequences.
11 155 of 13 564 patients with visit notes available opened at least 1 note (84% at BIDMC, 82% at GHS, and 47% at HMC). Of 5219 patients who opened at least 1 note and completed a postintervention survey, 77% to 87% across the 3 sites reported that open notes helped them feel more in control of their care; 60% to 78% of those taking medications reported increased medication adherence; 26% to 36% had privacy concerns; 1% to 8% reported that the notes caused confusion, worry, or offense; and 20% to 42% reported sharing notes with others. The volume of electronic messages from patients did not change. After the intervention, few doctors reported longer visits (0% to 5%) or more time addressing patients' questions outside of visits (0% to 8%), with practice size having little effect; 3% to 36% of doctors reported changing documentation content; and 0% to 21% reported taking more time writing notes. Looking ahead, 59% to 62% of patients believed that they should be able to add comments to a doctor's note. One out of 3 patients believed that they should be able to approve the notes' contents, but 85% to 96% of doctors did not agree. At the end of the experimental period, 99% of patients wanted open notes to continue and no doctor elected to stop.
Only 3 geographic areas were represented, and most participants were experienced in using portals. Doctors volunteering to participate and patients using portals and completing surveys may tend to offer favorable feedback, and the response rate of the patient surveys (41%) may further limit generalizability.
Patients accessed visit notes frequently, a large majority reported clinically relevant benefits and minimal concerns, and virtually all patients wanted the practice to continue. With doctors experiencing no more than a modest effect on their work lives, open notes seem worthy of widespread adoption.
The Robert Wood Johnson Foundation, the Drane Family Fund, the Richard and Florence Koplow Charitable Foundation, and the National Cancer Institute.
Electronic portals are increasingly used to provide patients with access to their medical records and to interact with the health care system.
In this study of doctors and patients who participated in a 1-year pilot program, most patients reported that the ability to read their doctors' office notes was beneficial and wanted the program to continue. Most doctors reported little or no impact on daily workload or patient anxiety or confusion.
The survey was completed by those who chose to participate in the program.
Providing patients with electronic access to their doctors' notes may have benefits without increasing doctors' workload.
Study flow diagram for doctors.
BIDMC = Beth Israel Deaconess Medical Center; GHS = Geisinger Health System; HMC = Harborview Medical Center; PCP = primary care physician.
Table 1. Characteristics of 105 PCPs Who Finished the Intervention, by Study Site
Study flow diagram for patients.
Appendix Table 1. Characteristics of 19 371 Patients Who Completed the Intervention, by Study Site
PCPs and patients who “agreed” or “somewhat agreed” with statements about the potential benefits of open notes to patients.
The percentage that responded “don't know” is not displayed. PCPs who responded “don't know” ranged from 8% to 26%. Patients who responded “don't know” ranged from 0% to 12%. BIDMC = Beth Israel Deaconess Medical Center; GHS = Geisinger Health System; HMC = Harborview Medical Center; PCP = primary care physician.
PCPs and patients who “agreed” or “somewhat agreed” with statements about the potential risks of open notes to patients.
The percentage that responded “don't know” is not displayed. PCPs who responded “don't know” ranged from 4% to 19%. Patients who responded “don't know” ranged from 0% to 3%. PCPs were not asked about patients' privacy concerns. BIDMC = Beth Israel Deaconess Medical Center; GHS = Geisinger Health System; HMC = Harborview Medical Center; PCP = primary care physician.
Table 2. Effect of Open Visit Notes on PCP Practice
Appendix Table 2. PCPs' Matched Pre- and Postintervention Survey Responses at BIDMC
Appendix Table 3. PCPs' Matched Pre- and Postintervention Survey Responses at GHS
Appendix Table 4. PCPs' Matched Pre- and Postintervention Survey Responses at HMC
PCPs and patients who “agreed” or “somewhat agreed” with statements about the future of open notes.
The percentage that responded “no opinion” is not displayed. PCPs who responded “no opinion” ranged from 0% to 13%. Patients who responded “no opinion” ranged from 6% to 19%. BIDMC = Beth Israel Deaconess Medical Center; GHS = Geisinger Health System; HMC = Harborview Medical Center; PCP = primary care physician.
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In this video, Tom Delbanco, MD and Jan Walker, RN, MBA offer additional insight into their original research article, "Inviting Patients to Read Their Doctors’ Notes: A Quasi-experimental Study and a Look Ahead."
David L. Fischman, MD, Howard H. Weitz, MD
Thomas Jefferson University Hospital, Philadelphia, PA
October 23, 2012
Culture of Transparency and Safety
There has been much in both the lay and medical press of late about safety or lack thereof in medicine. In a recent excerpt from his book “Accountability”, published in the Wall Street Journal (September 22,2012), Dr. Marty Makary claims that hospitals are unsafe and that each year 98,000 hospital deaths occur from medical errors. In his article, Dr. Makary provides twenty-year-old data to support his claim that there is a lack of accountability on the part of hospitals and physicians in the care of patients leading to medical errors and excess mortality. He touts several ideas with the presumption that they can improve the safety within hospitals. One of these concepts is “Open Notes”, where patients have access to their doctor’s notes. It is with excellent timing that the Annals of Internal Medicine published “Inviting patients to read their doctor’s notes: A Quasi-experimental study and a look ahead” (Delbanco T., et al. Oct 2,2012). In this study, the authors describe a practice of facilitating patient access to doctor visit notes via electronic link. With this means, patients felt more in control of their care and an increase in compliancy with the recommendations of their physicians, including medications. While the issue of safety was not specifically addressed, the concept of open notes should lead to improved patient safety. Contrary to the beliefs of Dr. Markary, Delbanco et al bring to light that American medicine has been quietly, but forcefully laying the groundwork for a culture of improved transparency that may enhance patient safety. It is time that we make our patients aware of what has already been done or is being done on their behalf and enlist their assistance in further studying the benefits as well as risks of patient access to the medical record. This is the least that we can do to move the culture of safety forward. In the meantime, patients need to know that although their records belong to the hospital or physician practices, they are accessible to them. They can and should ask to see their medical records so that they know that nothing is being hidden from them.
Hayward Zwerling, M.D. FACP, FACE
Lowell Diabetes & Endocrine Center
February 24, 2014
Patient Web Portals, OpenNotes: Utilization Rates in a Small Medical Practice
In 2012, three institutions decided to allow their patients to read their physicians’ progress notes (OpenNotes) via their institution’s patient web portal (1). The patient participation rate varied markedly among the three institutions: 47%, 84% and 92%. At the conclusion of the quasi-experiment, 99% of patients wanted to continue to have access to their progress notes and all physicians choose to continue in the OpenNotes project.
In response to that article, my office decided to allow our patients to read their progress note via our EMR’s patient web portal. My offices consist of two endocrinologists, one of whom does some primary care. Information about our patient web portal is prominently displayed in the exam rooms, waiting room and patient’s are encouraged to access our patient web portal by the front desk person and the physicians.
We recently our 2013 patient web portal statistics and found a much lower patient participation rate than was cited in the OpenNotes experiment.
In 2013, we saw a total of 2,322 unique patients and there were a total of 4,169 office visits. 13.7% of the patient’s accessed our patient web portal for any reason, which could have been to review their problem list, medicine list, allergy list, lab results, email their physician, pay a bill or to request a prescription refill. Only 4% of patients elected to read their progress notes.
Recently, there has been a push to get patients to utilize patient web portals as a means of encouraging patient engagement in the hope that that this will have a salutary effect on the healthcare system. A recent systematic review by Goldzweig et al(2) look at this issue and concluded “…we consider it unlikely that patient portals will have substantial effects on utilization or efficiency, at least in the near term…”
Although it remains unknown whether patient web portals and OpenNotes will eventually have a beneficial effect on the healthcare system, the data derived from one small medical practice, which is representative of a large fraction of US medical practices, would suggest that only a very small percentage of patients will use a patient web portal (for any reason) and an even smaller percentage will read their progress notes online. This fact would appear to support Goldzweig et al’s conclusion that patient web portals may not have a salutary effect on the healthcare system and societal resources should probably be redirected in another direction.
1. Tom Delbanco, MD et al. Inviting Patients to Read Their Doctors’ Notes: A Quasi-experimental Study and a Look Ahead. Ann Intern Med. 2012;157:461-470.
2. Caroline Lubick Goldzweig, MD, MSHS et al. Electronic Patient Portals: Evidence on Health Outcomes, Satisfaction, Efficiency, and Attitudes A Systematic Review. Ann Intern Med. 2013;159:677-687.
Delbanco T, Walker J, Bell SK, Darer JD, Elmore JG, Farag N, et al. Inviting Patients to Read Their Doctors' Notes: A Quasi-experimental Study and a Look Ahead. Ann Intern Med. 2012;157:461–470. doi: 10.7326/0003-4819-157-7-201210020-00002
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Published: Ann Intern Med. 2012;157(7):461-470.
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