… as Blease and colleagues point out in their article, the cloak that effectively covers many notes will be lifted on 2 November 2020, when the 21st Century Cures Act is implemented and patients are to have ready access to their medical record, including the clinical notes. Patients often misunderstand medical jargon. Will reading notes cause them confusion and distress? Physicians are already experiencing burnout from spending hours at the end of the day completing documentation for the electronic health record. Will writing notes with the realization that the patient may be reading them be one more burden for physicians?
Care partners value having access to their loved one’s information. The patient portal is a convenient way to access test results and clinical notes, communicate with health care practitioners, and link care partners to the clinical team, making it a powerful tool for realizing the goals of care.
The international movement pushing to increase transparency by giving patients easy access to their health information parallels a broader shift in healthcare towards increased patient empowerment and participation.
A new study from the OpenNotes project (1) suggests that giving patients access to their physicians’ visit notes may improve their understanding of and comfort with their medications, as well as adherence to medication regimens.
Error resulting from missed, delayed, or wrong diagnoses is estimated to occur in 10–15% of ambulatory and inpatient encounters, leading to serious harm in around half of such cases. When it comes to conceptualizing diagnostic error, most research has focused on factors pertaining to: (a) physician cognition and (b) ergonomic or systems factors related to the physician’s working environment. A third factor – the role of patients in diagnostic processes – remains relatively under-investigated. Yet, as a growing number of researchers acknowledge, patients hold unique knowledge about themselves and their healthcare experience, and may be the most underutilized resource for mitigating diagnostic error. This opinion article examines recent findings from patient surveys about sharing visit notes with patients online. Drawing on these survey results, the authors suggest three ways in which sharing visit notes with patients might enhance diagnostic processes: (1) avoid delays and missed diagnoses by enhancing timely follow up of recommended tests, results, and referrals; (2) identify documentation errors that may undermine diagnostic accuracy; and (3) strengthen patient-clinician relationships thereby creating stronger bidirectional diagnostic partnerships. The authors also consider the potential pitfalls or unintended consequences of note transparency, and highlight areas in need of further research.
In this issue, an American College of Physicians (ACP) position paper on Principles for Patient and Family Partnership in Care moves beyond longstanding rhetoric urging clinicians to become more “patient-centered” and calls for an aggressive turn toward true partnership. The ACP recommends that patients and families work closely with clinicians to improve medical education and health care systems. The paper cites ample evidence that such partnerships benefit patients and clinicians alike and argues that attention to dignity and respect may improve health outcomes, adherence to care plans, efficiency, and patient and clinician satisfaction.
Why has practice not adopted such principles? As an example, the OpenNotes initiative to spread the practice of sharing clinical notes with patients has encountered a powerful and multifaceted force resisting change within medicine: widespread disillusionment about the practice of medicine, fueled by the demands of fee-for-service payment, which still accounts for about 70% of medical revenue. Electronic health records often win the most disdain, but they are only the locus for documentation requirements that change frequently and result in beleaguered doctors who struggle with tasks that could be done by others with less training. Doctors today seem to see any request for change as “just another thing they have to do,” even if rewards seem likely.
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.
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.”
We congratulate Martin1 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,2 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 initiative3 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.
Hot coffee beckons with its promise of contraband comfort on a cold and busy Monday morning. Ms. H, my first patient, has not arrived yet. I consider a quick dash downstairs to the coffee shop. I can usually make it back in 4 minutes.… I glance at my email. You have 2 new PatientSite messages. I stay.
I close the many open windows on my computer and open the link. I approach the blinking vigil of the messages as I might a covered wound—with a mix of curiosity, a desire to help, and a sense of impending doom. I feel two competing desires: to leave the bandage on or lift it off as quickly as possible. A subconscious triage occurs—do I have enough time, attention, and emotional energy to respond in this moment?