Open Notes

9 Must-Read Publications: Open Notes and Ethical Challenges

By Charlotte Blease, PhD

9 Must-Read Publications: Open Notes and Ethical Challenges

As the 21st Century Cures take effect, clinicians are legally mandated to share access to patients’ notes. But is this the right thing to do? All innovations invite new challenges, and open notes are no different. At OpenNotes we study the ethical implications of sharing clinical notes and the ethical consequences for patients of clinicians hiding documentation. Our goal is to empower patients and clinicians by exploring how clinicians can optimize note sharing for the benefit of patients and their caregivers while also upholding – and even enhancing – the accuracy and detail of the clinical record by partnering with patients.

The research below reflects some of the ethical questions we have explored. The publications listed can also be found on the OpenNotes Research page.

Note: Most publications are open access or can be acquired by contacting the corresponding author listed on the website.

Sharing clinical notes: Is it the right thing to do?

We need to talk about “closed notes”, BMJ Opinion (2021)

In this personal blog, the author discusses the harmful consequence of “closed notes” – of denying patients rapid access to their online clinical information. The blog post describes “closed notes” as an inherited structure in healthcare but urges that this does not make it right.

Blease C. We need to talk about “closed notes,” BMJ Opinion, Oct. 15, 2021.

Patients, clinicians and open notes: Information blocking as a case of epistemic injustice, Journal of Medical Ethics (2021)

Drawing on multiple surveys comparing the experiences of clinicians and patients, this publication describes why clinicians’ negative perceptions unfairly discredit patients, leading to disadvantages and possible harms when they are unable to, or are discouraged from, accessing their clinical notes. The authors argue that open notes offer an underappreciated mechanism to strengthen patient-clinician teamwork, improve diagnostic processes and prevent errors.

Blease C, Salmi L, Rexhepi H, et al. Patients, clinicians and open notes: information blocking as a case of epistemic injustice. Journal of Medical Ethics.doi:10.1136/ medethics-2021-107275

Knowledge, power, and patients: The ethics of open notes, Blog of the Journal of Medical Ethics (2021

Do patients really need access to their health information, or should electronic health records be the sole preserve of clinicians? Using a variety of patient and caregiver case studies, this blog post explores what happens when notes are hidden from patients.

Blease C, DesRoches C, Hägglund M, et al. Knowledge, power, and patients: The ethics of open notes. Journal of Medical Ethics Blog (2021).

Sharing notes and social justice: Could open notes reduce inequities?

Empowering patients and reducing inequities: is there potential in sharing clinical notes? BMJ quality & safety (2020)

In several surveys patients who are older, less educated, non-white or whose first language is not English report even greater benefits from reading their notes than do their counterparts. However, for many reasons, persons from these demographic groups are less likely to use health portals than other patient populations. We explore why open notes may, over time, prove important in the care of patients who are at risk of experiencing healthcare disparities, and why encouraging patient access is a social justice concern.

Blease C, Fernandez L, Bell S, et al., Empowering patients and reducing inequities: is there potential in sharing clinical notes? BMJ Quality & Safety, http://dx.doi.org/10.1136/bmjqs-2019-010490

When and how should we share mental health notes?

The benefits and harms of open notes in mental health: A Delphi survey of international experts, PLOS ONE (2021)

This survey used a Delphi poll – an established methodology used to investigate emerging healthcare policy, including in psychiatry. International experts who included health professionals and persons with lived experience of mental healthcare were asked to give their opinions, anonymously, in three rounds of online surveys, and to offer their views about the potential benefits and harms of online access to mental health notes. Experts – drawn from 70 experts from six countries – agreed patients’ access to their mental health notes could offer multiple benefits and few harms.

Blease C, Kharko A, Hägglund M, et al. The benefits and harms of open notes in mental health: A Delphi survey of international experts. PLoS ONE 16(10): e0258056. https://doi.org/10.1371/journal.pone.0258056

Patient access to mental health notes: Motivating evidence-informed ethical guidelines, The Journal of Nervous and Mental Disease (2021)

This publication reviews existing research into sharing mental health notes to explore the benefits and risks of access, including how access can influence the therapeutic alliance, and why information blocking may increase feelings of stigmatization. The authors argue that further inquiry into opening mental health notes to patients is needed, particularly among persons with serious mental illness and those accessing psychological treatments.

Blease C, O’Neill S, Torous J. et al. Patient Access to Mental Health Notes: Motivating Evidence-Informed Ethical Guidelines. The Journal of Nervous and Mental Disease, 209(4), pp.265-269.

Preparing Patients and Clinicians for Open Notes in Mental Health: Qualitative Inquiry of International Experts, JMIR mental health (2021)

This web-based survey solicited the views of experts on provider policies and patient and clinician training or guidance in relation to open notes in mental health care. Experts were identified as informaticians, clinicians, chief medical information officers, patients, and patient advocates with extensive research knowledge about or experience of providing access to or having access to mental health notes. In total, 70 of 92 (76%) experts from 6 countries responded. Experts identified the need for: further refinement of exemption policies in relation to sharing mental health notes, enhanced guidance for patients, and curricular changes for students and clinicians to better prepare them for sharing mental health notes.

Blease C, Torous J, Kharko A, et al. Preparing Patients and Clinicians for Open Notes in Mental Health: Qualitative Inquiry of International Experts. JMIR Ment Health 2021;8(4):e27397

Sharing notes with mental health patients: balancing risks with respect, Lancet Psychiatry (2020)

In this publication, the authors argue that resolving the tension between patient transparency and potential harm requires mental health professionals to reimagine notes as a multi-purpose tool. The authors argue that incorporating patient feedback could improve precision in clinicians’ interpretations of patients’ subjective states, and that patients should receive guidance on how to access their records, on the benefits and potential downsides of reading notes, and on how to constructively raise concerns with clinicians.

Blease C, O’Neill S, Walker J, et al. Sharing notes with mental health patients: balancing risks with respect. The Lancet Psychiatry. February 11, 2020. DOI: 10.1016/S2215-0366(20)30032-8

Sharing clinical notes in psychotherapy: a new tool to strengthen patient autonomy, Frontiers in Psychiatry (2020)

Under the new federal rules in the US, psychotherapy notes remain exempt from sharing. However, the authors argue that open notes in psychotherapy could help to empower patients. This publication draws on evidence that informed consent to psychotherapy is “still not routine” and proposes that open notes may provide an important new strategy to help demystify the process by facilitating disclosure about psychotherapy treatment options, techniques, and other information relevant to decisions about care.

Blease C, Torous J, Kharko A, et al. Preparing Patients and Clinicians for Open Notes in Mental Health: Qualitative Inquiry of International Experts. JMIR Ment Health 2021;8(4):e27397

NEW WEBINAR

Getting It Write: What To Do Now That Patients in England Can Read Their GP Notes

Tuesday, November 1, 2022  |  8am Pacific Standard Time (PST)
11am Eastern Standard Time (EST) / 3pm Greenwich Mean Time (GMT)

While open notes have been the “law of the land” in the United States for more than a year, in England, adult patients accessing care through the National Health Service (NHS) will have access to their primary care record online for the first time starting Nov. 1, 2022.

In this webinar, we’ll be joined by open notes experts and discuss what this change means for patients and general practitioner (GP) staff in England.

Learn More

close-link

Know your stuff!

Be the first to know about new OpenNotes education, research and initiatives for clinicians, researchers, learners and advocates.
SIGN UP NOW
By signing up you agree to receive emails from OpenNotes. We do not share your information with anyone. You may unsubscribe at any time.
close-link