Can Sharing Clinical Notes Increase Patient Engagement And Retention?

By Ed Miseta, Chief Editor, Clinical Leader

A common pain point in clinical trials is patient retention. Getting patients to enroll in a clinical trial is hard enough, but having some of them drop out before the study is complete can delay the results, and cost sponsors valuable time and money. But what can be done to keep patients onboard?

One belief is that if patients are more engaged with the study, and take more of an ownership role in their health and data, that they will become more attached to the study and the treatment. Some pharma companies are even looking into the possibility of patients being able to review and delete their own data. But what about notes that are recorded by a physician during a patient’s visit to a clinic? Should that information also be shared with patients?

In thinking about this topic, I was reminded of an episode of Seinfeld titled “The Package.” In it, Elaine is unable to get medical treatment for a rash because of her reputation as a difficult patient. Each time she has another encounter with a physician, a note is made in her records, which she is not allowed to view. She eventually resorts to hiring Kramer to pose as a doctor to try and steal the file.

Now there is reason to believe doctors should be sharing their notes. When patients are seated in front of a physician, whether for a normal checkup or as part of a clinical trial, they receive a lot of information about their care. Part of that information includes what they need to take, when, and under what conditions. For many patients and care givers, remembering all of that information when it comes time to take the medicine can be a difficult, if not impossible, task. However, if that information is available in OpenNotes, where a patient can access and review the information, the job is made easier.

A recent article on HealthLeaders Media notes between 40 and 80 percent of what a patient hears from their physician is immediately forgotten, and about half of what they do remember, they get wrong. In a clinical trial, the result can be significant patient non-compliance.

One study, supported by the Robert Wood Johnson Foundation, undertook a 12-month study of OpenNotes. In it, the notes of 105 doctors were shared with more than 19,000 patients in Massachusetts, Pennsylvania, and Washington. The study found when patients had access to the doctor’s notes, they felt more in control of their healthcare, better understood their medical issues, and reported they were more likely to take their medicines as prescribed. Almost all of the patients supported the idea of seeing the notes, and no physicians opted to stop sharing the notes once the study came to an end.

More importantly, the study concluded this simple idea has the potential to transform the way patients engage with their healthcare, and will enable them to become true partners in discussions and decisions regarding their care. In an industry where there is a huge push to treat patients as partners, the results should be hailed as welcome news.

Now A New Study Confirms Results          

A new study now seems to verify those earlier results. Doctor John Maif, professor at the David Geffen School of Medicine at UCLA, also felt there was a communication problem that existed in healthcare, which resulted in miscommunication and forgetfulness. He believes the result of this miscommunication is low patient engagement, poorly managed conditions, and unfilled prescription medications. In a clinical trial, that would also likely equate to poor patient data and retention.

Maif is the lead author of a study that appeared in the Journal of the American Medical Informatics Association. The study, published on February 11, 2016, looked at whether email reminders had an effect on patients accessing physician notes in the OpenNotes program. His study found that sharing physician notes with patients, and email reminders to them that the notes are available, can help to keep them engaged and be more likely to take their medications.

In addition to the patients, the doctors also seemed to be happy with the results. While many felt the emails would interrupt their daily workflow, they instead found their email volume to be unchanged. When offered the opportunity to opt out, none did.

Maif did note the other questions still remain. There was no way to determine how helpful the email reminders were to patients, and although the program was successful over the one year it was conducted, it remains to be seen whether patients would continue to read the note two and three years out.