Patients living with HIV/AIDS face large societal and medical challenges. Inviting patients to read their doctors’ visit notes via secure electronic portals may empower patients and improve health. We investigated whether utilization and perceptions about access to doctors’ notes differed among doctors and patients in an HIV/AIDS clinic versus primary care setting. We analyzed pre- and 1-year postintervention data from 99 doctors and 3819 patients. HIV clinic patients did not report differences in perceived risks and benefits compared to primary care clinic patients, however, they were more likely to share notes with friends (33% versus 9%, P = .002), other health professionals (24% versus 8%, P = .03), or another doctor (38% versus 9%, P < .0001). HIV clinic doctors were less likely than primary care doctors to change the level of candor in visit notes (P < .04). Our findings suggest that HIV clinic patients and doctors are ready to share visit notes online.
OpenNotes
Open visit: a patient’s perspective and expanding national experience
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.
Dermatology in an Age of Fully Transparent Electronic Medical Records
More than 4 decades have passed since the call for “giving patients their medical records” was first proposed to increase patient engagement in health care delivery.1 Today, this vision—once considered radical—is quickly becoming reality, with millions of Americans routinely accessing their medical records through web-based patient portals.1
The electronic health record content that patients can access online is expanding to include physicians’ documentation of patient visits. Recent studies evaluating OpenNotes, a patient-centered initiative enabling online access to providers’ clinical notes, have demonstrated high levels of patient utilization and improved self-reported understanding of care planning and medication adherence, resulting in patients “feeling more in control of their health care.”1
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.
HealthIT Outcomes: Access To Notes Empowers Patients In Pilot Study
Psychiatry and social work clinicians report positive results from the mental health pilot at Beth Israel Deaconess Medical Center, an attempt to measure the use of OpenNotes to share mental health notations with patients. Beth Israel Deaconess Medical Center (BIDMC) in Boston – an academic medical center affiliated with Harvard Medical School – employs approximately…
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
The “Open Letter”: Radiologists’ Reports in the Era of Patient Web Portals
Historically, radiologists’ official written reports have functionally been proprietary communications between radiologists and referring providers. Although never secret, these reports have traditionally been archived in the medical record, with tightly controlled access. Patients rarely viewed reports directly. As patient-centered care, transparent communication, and electronic archiving have converged, however, radiologists’ reports, like many other medical record components, are increasingly accessible to patients via web-based “portals.” Many radiologists harbor justified anxiety about whether and how radiology reports should change in response to these portals.
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.
Let’s Show Patients Their Mental Health Records
Should we health professionals encourage patients with mental illness to read their medical record notes? As electronic medical records and secure online portals proliferate, patients are gaining ready access not only to laboratory findings but also to clinicians’ notes. Primary care patients report that reading their doctors’ notes brings many benefits including greater control over their health care, and their doctors experience surprisingly few changes in workflow. While patients worry about electronic records and potential loss of privacy, they vote resoundingly for making their records more available to them and often to their families.
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