OpenNotes began as a simple but radical question.
What would happen if doctors made it easier for patients to review what’s written in their heath record by sharing the full record, including the visit notes, online using secure patient portals?
When the idea was first tested in 2010, HIPAA had already been in place for years, but medical record transparency was far from standard. Because the process of retrieving paper records is often tedious and costly, very few patients took advantage of the rights provided under HIPAA legislation. However, the OpenNotes study results showed that when patients were given the opportunity to read their notes, online, for free, not only did 99 percent of patients say they wanted the practice to continue, but 85 percent said the availability of open notes would affect their future choice of health care providers.
The findings suggested an overwhelmingly positive impact resulting from the patients’ ability to engage with their own health information:
- 80 percent felt they understood their conditions better
- 77 percent felt more in control of their health and health care
- 60 percent reported taking their medications better
More recent research suggests that note sharing has the power to improve trust and the doctor/patient relationship, especially among patients considered to be most vulnerable. And giving patients the opportunity to review their notes allows patients to partner in the safety of their own care, by not only reminding them of next steps, but also giving them an opportunity to catch errors.
What’s more, research shows that caregivers report similar findings, benefiting from note sharing as much as the patients themselves.
Get involved and pilot this Flip:
Join the movement by requesting your records (check out Flip #55), and letting your doctor and health system know that you want your notes, available online as soon as possible.
Start sharing your notes with your patients electronically or on paper, and let health system leadership know you’d like to share them on the patient portal.
Commit to openness and transparency by implementing OpenNotes.
OpenNotes has now become a movement promoting openness and transparency in health care and working to make open notes the standard of care for all patients. The movement has released several free, online toolkits to guide health systems and patients through the process of sharing notes.
The initial OpenNotes study was funded by the Robert Wood Johnson Foundation, The Gordon and Betty Moore Foundation, the Peterson Center on Healthcare, and the Cambia Health Foundation have since joined RWJF to support innovation, research, and the goal of spreading OpenNotes to 50 million patients nationwide by 2020.
Doctors in the initial study were concerned that the notes would worry or confuse patients, that they would need to change the way they wrote their notes, and that patients would contact them more, adding to their workload.
These continue to be the primary concerns of clinicians who have not yet started sharing notes. But as dozens of health systems across the country have implemented OpenNotes, the response has been remarkably consistent with the original findings.
Most health systems call OpenNotes implementation, a ‘non-event,’ with most clinicians experiencing no overall change to their workload or practice. And for those who report changing the way they write their notes, most say the changes make their notes better.
Some clinicians are beginning to notice that note sharing may actually reduce their workload. They say some patients contact them less because they can answer their own questions by accessing the visit notes.
During the one year testing period, very few patients (1-8%) reported being confused, worried, or offended by what they read in their notes. 77-85% reported better understanding of their health and medical conditions. 77-87% felt more in control of their care. 70-72% said they took better care of themselves. 60-78% reported doing better with taking their medications. 99% of patients wanted OpenNotes to continue. 85-89% of patients said availability of OpenNotes would influence their future choices of doctors and health plans.An analysis of email traffic before and during the trial showed that overall, doctors did not receive more messages from patients. 17-26% of doctors preferred not to continue, but when offered the chance to stop, none did. Many doctors described strengthened relationships with their patients.