Den Patienten den Einblick in die eigenen Gesundheitsinformationen zu gewähren, kann unter anderem ihre aktive Rolle verstärken. Sie sind daran interessiert, bei der Erstellung und Bereitstellung ihrer medizinischen Aufzeichnungen beteiligt zu werden. Da sich die Transparenz im Umgang mit medizinischen Dokumenten gegenwärtig ausbreitet, ist es wichtig, ein besseres Verständnis für Vor- und Nachteile zu gewinnen. Das gilt für Patienten und Ärzte gleichermaßen. Zudem können Zielgruppen identifiziert werden, die möglicherweise unterschiedliche Formen der Übermittlung erfordern. Weitere, vertiefende Studien sind notwendig.
Editorial / Commentary
Transparent Electronic Health Records and Lagging Laws
Millions of patients are accessing their medical records online via secure electronic patient portals. They are also increasingly uploading data directly into their records, and many clinicians now offer patients ready and ongoing access to the notes that document encounters. In response, patients report improved understanding of their care, better recall, enhanced adherence to care plans, and an increased sense of control over their health.
Soliciting patient feedback on visit notes: An educational opportunity
Patient and family engagement is gaining attention as a priority in patient care1 and medical education.2 OpenNotes, an innovation that invites patients to read their visit notes through a secure online portal, has demonstrated several health benefits.3 Over five million U.S. patients have online access to their notes today; shared visit notes may not only engage patients in care but also open the door to new educational innovations.
Intrigued by the idea of patient/family feedback on visit notes, our research team asked residents and their supervisors whether such feedback would be helpful.4 In surveys and focus groups, many agreed it would be.
When Patients Teach
As soon as the elevator door closed, the tears gave way, and I walked home with my head down … thoughts of my mistakes running rampant.
So began the reflection of a third-year medical student, who described falling short of his residents’ expectations on a history and physical examination. The crucial flaw? He had taken too long. His reflection continued:
[The next day], an elderly patient, traction stockings covering her small, dark brown legs, shuffled toward me. She stopped directly in front of me, her delicate, slightly stooped frame supported by her thin hand, grasping the IV pole. “Young man,” she said, “I heard you speaking to the patient in the bed next to me [last night]. And I just wanted you to know that I’m just so proud of you.… How you spoke to that patient with such care and intelligence. I’m just so proud.”
Family Caregivers and Consumer Health Information Technology
Health information technology has been embraced as a strategy to facilitate patients’ access to their health information and engagement in care. However, not all patients are able to access, or are capable of using, a computer or mobile device. Although family caregivers assist individuals with some of the most challenging and costly health needs, their role in health information technology is largely undefined and poorly understood. This perspective discusses challenges and opportunities of engaging family caregivers through the use of consumer-oriented health information technology. We compile existing evidence to make the case that involving family caregivers in health information technology as desired by patients is technically feasible and consistent with the principles of patient-centered and family-centered care. We discuss how more explicit and purposeful engagement of family caregivers in health information technology could advance clinical quality and patient safety by increasing the transparency, accuracy, and comprehensiveness of patient health information across settings of care. Finally, we describe how clarifying and executing patients’ desires to involve family members or friends through health information technology would provide family caregivers greater legitimacy, convenience, and timeliness in health system interactions, and facilitate stronger partnerships between patients, family caregivers, and health care professionals.
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
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.
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.
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.