It’s a simple concept with powerful implications: give patients access to their clinical notes. Let patients review their caregiver’s analysis and give them an opportunity to add additional information or correct mistakes. Make summaries and instructions available so patients can review responsibilities and take ownership of their health. Pull back the curtain and provide patients total transparency into their health. Embrace the guiding principle of, “nothing about me without me”.
For nearly a decade, Tom Delbanco, MD, & Jan Walker, RN, MBA, have been promoting this philosophy through their organization, OpenNotes. Since starting in 2010 as an RWJF funded study at Beth Israel Deaconess Medical Center (Boston), Geisinger Health System (Pennsylvania), and Harborview Medical Center (Seattle), OpenNotes has spread to 37 states and enables 13 million patients to review and share their medical notes.
With overwhelmingly positive data available supporting the benefit of making notes available to patients, the question is: why don’t all patients have access to their notes? What is preventing the rest of healthcare from opening up this information to patients?
The case against
Providers who oppose opening notes to all patients generally fall into one of three categories:
- Those who feel it will disrupt their workflow and take additional time.
- Those who believe it will scare, confuse, or offend their patients.
- Those with genuine concerns for patient safety.
While further research is needed, the current subject matter seems to support that the benefits of open notes outweigh these risks.
OpenNotes has been very diligent in their research and has reported minimal disruption to provider workflows—the provider still documents and signs their notes, and there’s no extra step when it comes to making them available (that’s usually handled through a patient portal associated with their EHR). While providers may feel the need to change the way they write notes knowing the patient will be reading them, the adjustment appears minor with physicians reporting little impact on their work lives.
In a similar vein, physicians sometimes worry that OpenNotes will take up time because patients will schedule more visits due to questions or concerns about the notes. However, research on this subject shows that after physician visits, patients engage more with notes via their online portal, but the reverse is not true in that increased portal engagement does not lead to an increase in primary care visits.
With regard to the second concern, numerous studies report that very few patients are scared, confused, or offended by the physician’s notes, but rather viewed the notes as valuable insights into their health, helping them understand the benefits of things like medication adherence and treatment plans (1, 2, 3).
As for the patients, reported responses show that there’s much more interest in having access to this information than a reason to fear what may be revealed. In initial pilots, 80% of patients read their notes and 99% said the practice should continue making them available. In an even stronger endorsement, 85% of patients said access to open notes would factor into their selection of future providers.
When it comes to patient safety, there are very legitimate reasons providers are concerned about the concept of open notes. What if the patient is in an abusive relationship and makes this known to their primary care physician? What if the abusive partner can log into the patient’s portal and review this information? What if that triggers an attack? In these scenarios, it might make sense to restrict access to certain information. While this is extremely difficult to judge, there are features in nearly all EHRs when it comes to making notes available that allow filtering of certain information. This requires a great deal of thought from leadership and effective technology implementation and training, but it is certainly doable and shouldn’t prevent all of the positives that come from making this information available.
Furthering the mission
This April, OpenNotes founders Tom Delbanco and Jan Walker were presented the 5th Annual Data Liberator Award at Health Datapalooza in Washington, D.C. Their acceptance speech highlighted the desire of patients to access readable medical records and have a mechanism to “co-produce” their health histories. They shared the incredibly positive impact opening notes to patients can have on their engagement levels and outcomes. They also touched on the resistance they face in pushing their mission forward and the culture changes that need to occur before notes will be open to patients everywhere. We want to salute them and the entire OpenNotes team for their work on this incredibly meaningful mission. We share their enthusiasm for empowering patients and hope to help spread these values. We urge anyone who has concerns about granting patients access to their medical notes to review the research available and consider the profound benefits that have been reported across the board.
To learn more about OpenNotes and how to contribute, head over to https://www.opennotes.org/.
Thanks for all you do!