Article Text

Download PDFPDF

Open notes and broader parallels in digital health: a commentary on C. Blease’s ‘Sharing online clinical notes with patients’
  1. Sarah Chang,
  2. John Torous
  1. Division of Digital Psychiatry, Beth Israel Deaconess Medical Center, Harvard Medical School, Boston, Massachusetts, USA
  1. Correspondence to John Torous, Harvard Medical School, Boston, MA 02115, USA; jtorous{at}bidmc.harvard.edu

Statistics from Altmetric.com

Request Permissions

If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.

With more countries implementing Open Notes, the practice of providing patients with unhindered access to their clinical visit notes, research on this practice is finally increasing. Many studies report positive findings, especially around self-reported outcomes, such as feeling more in control of one’s care, increased medication adherence and a strengthened patient–doctor relationship.1

However, comparatively less research has been done on the potential ramifications that may also arise from Open Notes. Blease’s recent article underscores this and demonstrates why Open Notes must also be considered in terms of nocebo effects, negative side effects that arise from negative expectations.2 The article presents a compelling and well-thought-out argument for how nocebo effects may vary across different populations by linking patient–clinician communication inequalities with and by presenting preliminary evidence of nocebo effects. Blease’s argument does not detract from Open Notes, but rather takes a balanced approach by imploring us to consider both risks and benefits while striving to minimise the former through clinician training.

The presented ethical implications regarding Open Notes are highly relevant to the entire space of digital health. With the rapid proliferation of health smartphone apps and wearables brimming with convenient health tracking technology, there is broad enthusiasm for using technology to increase quality of and access to services, particularly to underserved populations. For example, in the mental health field, studies suggest apps can help reduce symptoms of anxiety or depression.3 However, like Open Notes, the benefits of mental health apps have been explored more thoroughly than possible negative outcomes. Ethical concerns related to lack of privacy with health apps have been investigated, yet less concern has been raised over possible detrimental effects related to specific in-app activities and symptom tracking that these smartphone apps facilitate. In the paper, ‘There is a non-evidence-based app for that’, our team explored mental health apps that provided non-evidence based mental health techniques. While some users of these apps reported benefits especially around using in-the-moment coping skills, others found the apps detrimental.4 Despite this, many apps continue to overclaim benefits without demonstrating efficacy and little continues to be known about how apps may cause harm. Any findings that do exist have often emerged as secondary, rather than primary results from studies with other focuses.

One plausible mechanism for how apps may cause harm is through over-reliance on and preoccupation with health tracking data. Just as Open Notes may induce nocebo effects, symptom tracking technology, a feature provided by many health apps, may also cause nocebo effects. For example, in a study by Baron et al, the authors coined the term ‘orthosomnia’ to describe the condition in which one is so concerned with perfecting their sleep tracker data that in the pursuit of doing so, one’s sleep suffers. In fact, it was noted that the sleep data reinforced poor sleep habits as patients continuously spent excessive time in bed to improve their sleep data. Furthermore, the patients believed the data were more accurate over even well-validated techniques such as polysomnography.5 Most commercial sleep trackers are not fully accurate in assessing quality and quantity of sleep, so even if one’s sleep data reflect poor sleep quality, one might not have necessarily slept poorly. Any anxiety caused by data suggesting poor sleep quality may promote poorer sleep and perhaps eventually induce sleep disruption. While this study and example focused on tracking sleep through wearables, these principles are applicable to other forms of health tracking across any conditions monitored through smartphones and wearables. Sharing back this novel and often non-validated patient data may benefit some but may also induce adverse effects such as nocebo effects in others.

Every treatment presents benefits and risks. Studying these risks does not detract from the benefits and, instead, may prove fruitful in ensuring treatments are more effective and safer. The current literature on Open Notes and mHealth apps undoubtedly demonstrates the utility and benefits of these tools. Nevertheless, as Blease suggests, the principle of ‘do no harm’ does not disappear just because there are clear benefits. Thus, the parallels and lessons from Open Notes to the broader digital health space are clear: we must carefully consider and mitigate any harm arising from apps and the accompanying health tracking data.

Collaboration between digital health developers, researchers and clinicians holds broad potential that requires deliberation. First, there must be more accountability and transparency. Before presenting health tracking data, developers should clearly state the limitations of such technology. The accuracy of said data often depends on behavioural consistency among other factors such as having one’s phone continuously present and charged. Providing human support to explain this may keep patients from obsessing over their data. Clinicians must also be educated to help patients use digital health tools and data towards benefiting, not harming, their health. Our team has developed the Digital Navigator role to help patients engage with their health data while assisting both the patient and clinician with interpreting said data. We found the Digital Navigator equally useful for supporting both patients and clinicians. Finally, developers can create a new generation of tools designed to better support the needs of patients and clinicians with features designed to maximise the benefits and safety while minimising harms.

As Blease noted, the way different digital health innovations, be it Open Notes or health apps, are uptaken, used, and impacting different communities remains obscure. Like Open Notes, digital health innovations may also have disparate benefits and harms on different populations. While exploring all this innovation seems daunting, the reality need not be so. The discussion over the benefits and risks and adding such into studies can be started today. Expanding clinical research into diverse communities is a newer priority and ensuring these efforts highlight the disparate impact of these innovations on various populations can ensure that relevant data are captured.

In summary, Blease raises brilliant points around Open Notes that offer parallels to the broader digital health space. As we explore the benefits of innovation, we must not ignore the risks, but rather embrace the opportunity to minimise them.

References

Footnotes

  • Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

  • Competing interests None declared.

  • Provenance and peer review Commissioned; internally peer reviewed.

Linked Articles