Online electronic healthcare records: Comparing the views of cancer patients and others

Rexhepi, Hanife; Moll, Jonas; Huvila, Isto

doi:10.1177/1460458220944727

Cited by 11 publications

(14 citation statements)

References 32 publications

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“…Unsurprisingly, patients with more severe medical conditions (such as cancer) appear to access their health records more frequently. 36 In some, 37,38 but not all, 39 studies, patients reported symptoms of anxiety after accessing their medical records. In oncology, the most radical form of unrestricted access to EHRs by patients is to test reports (especially imaging results).…”

Section: The Subtle Burdens Of Patients' Unrestricted Access To Ehrs ...mentioning

confidence: 99%

Telehealth, Social Media, Patient Empowerment, and Physician Burnout: Seeking Middle Ground

Mano

Morgan

2022

American Society of Clinical Oncology Educational Book

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The digital revolution is an ongoing process that has nevertheless profoundly affected century-old medical practice. Digitalization has many facets, ranging from telehealth to social media and even new instant communication devices, each of which affect both patients’ and physicians’ realities. Although the benefits of developments such as telehealth and novel applications of social media to medicine are more easily perceived by all stakeholders, they still have their own hurdles and risks, such as coldness and impersonal treatment in telehealth, and misinformation on social media. The widespread digitalization of health records has greatly facilitated patient access to health information, becoming a major patient empowerment tool; however, some forms of unrestricted access, such as to test results—in particular, prior to consultations—have unclear benefits to patients with cancer and have also become a hurdle for care teams. In addition, the advent of instant messaging, which is revolutionizing personal communication in many cultures, is gradually affecting patient-physician communication and, combined with unrestricted patient access to test results, is creating new challenges for physicians. How these transformations are affecting patients themselves and physicians’ well-being and mental health are matters addressed in this text. Last, to address potential biases in an article written by two oncologists, and in line with this year’s ASCO presidential theme of including a diversity of voices, we decided to give voice to patients with cancer by collecting the opinions of high-profile patient advocates about the controversial topics addressed in this text.

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Section: The Subtle Burdens Of Patients' Unrestricted Access To Ehrs ...mentioning

confidence: 99%

Telehealth, Social Media, Patient Empowerment, and Physician Burnout: Seeking Middle Ground

Mano

Morgan

2022

American Society of Clinical Oncology Educational Book

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“…In this first region-wide trial, the patients were offered access to their notes through an online patient portal called ‘Journalen’. 23 24 Then, in 2015, Journalen was launched as the national system in Sweden for online access to clinical notes. At the end of 2018, all regions had implemented Journalen and today, in a population of around 10 million, more than 4.5 million citizens have accessed their clinical notes.…”

Section: Background On Open Notesmentioning

confidence: 99%

Patients, clinicians and open notes: information blocking as a case of epistemic injustice

et al. 2021

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In many countries, including patients are legally entitled to request copies of their clinical notes. However, this process remains time-consuming and burdensome, and it remains unclear how much of the medical record must be made available. Online access to notes offers a way to overcome these challenges and in around 10 countries worldwide, via secure web-based portals, many patients are now able to read at least some of the narrative reports written by clinicians (‘open notes’). However, even in countries that have implemented the practice many clinicians have resisted the idea remaining doubtful of the value of opening notes, and anticipating patients will be confused or anxious by what they read. Against this scepticism, a growing body of qualitative and quantitative research reveals that patients derive multiple benefits from reading their notes. We address the contrasting perceptions of this practice innovation, and claim that the divergent views of patients and clinicians can be explained as a case of epistemic injustice. Using a range of evidence, we argue that patients are vulnerable to (oftentimes, non-intentional) epistemic injustice. Nonetheless, we conclude that the marginalisation of patients’ access to their health information exemplifies a form of epistemic exclusion, one with practical and ethical consequences including for patient safety.

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“…Professional reluctance to raise awareness about access is also found in other countries. For example, in a survey of doctors in the USA, even after opening visit note summaries to patients, 78% (n=620) admitted that they did not encourage patients to read their documentation 30. Indeed, in a recent qualitative study among patients in England, participants reported that online access should be better promoted 17…”

Section: Discussionmentioning

confidence: 99%

Experiences and opinions of general practitioners with patient online record access: an online survey in England

Blease,

Kharko,

Dong

et al. 2024

BMJ Open

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ObjectiveTo describe the experiences and opinions of general practitioners (GPs) in England regarding patients having access to their full online GP health records.DesignConvenience sample, online survey.Participants400 registered GPs in England.Main outcome measuresInvestigators measured GPs’ experiences and opinions about online record access (ORA), including patient care and their practice.ResultsA total of 400 GPs from all regions of England responded. A minority (130, 33%) believed ORA was a good idea. Most GPs believed a majority of patients would worry more (364, 91%) or find their GP records more confusing than helpful (338, 85%). Most GPs believed a majority of patients would find significant errors in their records (240, 60%), would better remember their care plan (280, 70%) and feel more in control of their care (243, 60%). The majority believed they will/already spend more time addressing patients’ questions outside of consultations (357, 89%), that consultations will/already take significantly longer (322, 81%) and that they will be/already are less candid in their documentation (289, 72%) after ORA. Nearly two-thirds of GPs believed ORA would increase their litigation (246, 62%).ConclusionsSimilar to clinicians in other countries, GPs in our sample were sceptical of ORA, believing patients would worry more and find their records more confusing than helpful. Most GPs also believed the practice would exacerbate work burdens. However, the majority of GPs in this survey also agreed there were multiple benefits to patients having online access to their primary care health records. The findings of this survey also contribute to a growing body of contrastive research from countries where ORA is advanced, demonstrating clinicians are sceptical while studies indicate patients appear to derive multiple benefits.

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Online electronic healthcare records: Comparing the views of cancer patients and others

Cited by 11 publications

References 32 publications

Telehealth, Social Media, Patient Empowerment, and Physician Burnout: Seeking Middle Ground

Telehealth, Social Media, Patient Empowerment, and Physician Burnout: Seeking Middle Ground

Patients, clinicians and open notes: information blocking as a case of epistemic injustice

Experiences and opinions of general practitioners with patient online record access: an online survey in England

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