We congratulate Martin on his thoughtful description of how he has opened clinical notes to his patients. We write in response from two perspectives. One of us (D.deB.) is a patient who has become active in the world of patient engagement, a switch in careers triggered by widely metastatic renal carcinoma, now in remission for several years thanks to superb care by physicians and nurses in primary care and oncology. The second author (J.W.) is one of the leaders of the OpenNotes initiative and a health services researcher, with a background in nursing. We touch first on several points that draw on a growing national experience with fully transparent medical records and then offer the perspective of a patient and consumer advocate.
Patient Experience
VA OpenNotes: exploring the experiences of early patient adopters with access to clinical notes
Objective To explore the experience of early patient adopters who accessed their clinical notes online using the Blue Button feature of the My HealtheVet portal.
Methods A web-based survey of VA patient portal users from June 22 to September 15, 2013.
Results 33.5% of respondents knew that clinical notes could be viewed, and nearly one in four (23.5%) said that they had viewed their notes at least once. The majority of VA Notes users agreed that accessing their notes will help them to do a better job of taking medications as prescribed (80.1%) and be better prepared for clinic visits (88.6%). Nine out of 10 users agreed that use of visit notes will help them understand their conditions better (91.8%), and better remember the plan for their care (91.9%). In contrast, 87% disagreed that VA Notes will make them worry more, and 88.4% disagreed that access to VA Notes will be more confusing than helpful. Users who had either contacted their provider or healthcare team (11.9%) or planned to (13.5%) primarily wanted to learn more about a health issue, medication, or test results (53.7%).
Conclusions Initial assessment of the patient experience within the first 9 months of availability provides evidence that patients both value and benefit from online access to clinical notes. These findings are congruent with OpenNotes study findings on a broader scale. Additional outreach and education is needed to enhance patient awareness. Healthcare professionals should author notes keeping in mind the opportunity patient access presents for enhanced communication.
US experience with doctors and patients sharing clinical notes
The move to offer patients online access to their clinicians’ notes is accelerating and holds promise of supporting more truly collaborative relationships between patients and clinicians, say Jan Walker, Michael Meltsner, and Tom Delbanco
For decades clinicians have experimented with making medical records available to patients.1 2 3 4 5 6 Now electronic medical records and associated secure internet portals provide patients the opportunity to view test results, medications, and other selected parts of the medical record on line.7 But few patients are offered full access to their records; clinicians’ notes are rarely visible. After a demonstration project showed the acceptability of OpenNotes (www.myopennotes.org) in the US,8 several prominent healthcare providers decided to make clinicians’ notes available to patients online before further formal evaluation. We describe the OpenNotes movement in the US and how sharing notes with patients is spreading. We also underline the case for research to assess the long term effect of sharing notes and the potential to foster improved and truly collaborative care.
Patients Who Share Transparent Visit Notes With Others: Characteristics, Risks, and Benefits
Inviting patients to read their primary care visit notes may improve communication and help them engage more actively in their health care. Little is known about how patients will use the opportunity to share their visit notes with family members or caregivers, or what the benefits might b
Blue Button use by patients to access and share health record information using the Department of Veterans Affairs’online patient portal
Objective
The Blue Button feature of online patient portals promotes patient engagement by allowing patients to easily download their personal health information. This study examines the adoption and use of the Blue Button feature in the Department of Veterans Affairs’(VA) personal health record portal, My HealtheVet.
Materials and methods
An online survey presented to a 4% random sample of My HealtheVet users between March and May 2012. Questions were designed to determine characteristics associated with Blue Button use, perceived value of use, and how Veterans with non-VA providers use the Blue Button to share information with their non-VA providers.
Online Access to Doctors’ Notes: Patient Concerns About Privacy
Offering patients online access to medical records, including doctors’ visit notes, holds considerable potential to improve care. However, patients may worry about loss of privacy when accessing personal health information through Internet-based patient portals. The OpenNotes study provided patients at three US health care institutions with online access to their primary care doctors’ notes and then collected survey data about their experiences, including their concerns about privacy before and after participation in the intervention.
Patient Experiences With Full Electronic Access to Health Records and Clinical Notes Through the My HealtheVet Personal Health Record Pilot: Qualitative Study
Full sharing of the electronic health record with patients has been identified as an important opportunity to engage patients in their health and health care. The My HealtheVet Pilot, the initial personal health record of the US Department of Veterans Affairs, allowed patients and their delegates to view and download content in their electronic health record, including clinical notes, laboratory tests, and imaging reports.
Inviting Patients to Read Their Doctors’ Notes: A Quasi-experimental Study and a Look Ahead
Electronic medical records and secure patient portals hold exciting potential for more active patient involvement in care and improved communication between patients and clinicians. These technologies facilitate a potentially disruptive innovation: Doctors can readily invite patients to read and share their visit notes and even contribute to the notes’ formulation. We conducted a quasi-experimental study, OpenNotes, in which more than 100 primary care physicians (PCPs) volunteered to invite more than 20 000 of their patients to review online the notes that the doctors wrote and signed after an office visit
Evaluating the impact of patients’ online access to doctors’ visit notes: designing and executing the OpenNotes project
Background
Providers and policymakers are pursuing strategies to increase patient engagement in health care. Increasingly, online sections of medical records are viewable by patients though seldom are clinicians’ visit notes included. We designed a one-year multi-site trial of online patient accessible office visit notes, OpenNotes. We hypothesized that patients and primary care physicians (PCPs) would want it to continue and that OpenNotes would not lead to significant disruptions to doctors’ practices.
Inviting Patients to Read Their Doctors’ Notes: Patients and Doctors Look Ahead: Patient and Physician Surveys
Background:
Little is known about what primary care physicians (PCPs) and patients would expect if patients were invited to read their doctors’ office notes.
Objective:
To explore attitudes toward potential benefits or harms if PCPs offered patients ready access to visit notes.
Design:
The PCPs and patients completed surveys before joining a voluntary program that provided electronic links to doctors’ notes.
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