OpenNotes - End Notes

Prompted by the launch of the OpenNotes project, I've been exploring the idea of patients reading their medical chart. Here are my conclusions:

It's a waste of time to argue about whether giving patients access to their chart is a good or bad idea. Patients have had the right to review and amend their charts since passage of the Health Insurance Portability and Accountability Act of 1996 (HIPAA). Information technology is here to stay. I believe it's just a matter of time before electronic medical records are universal and patients read their online charts more often than not.

The challenge for today's clinicians is crafting chart notes that are (1) optimally useful by clinicians in the care of patients and (2) helpful -- or, at least, not harmful -- to patients who read their chart. This is no easy task and will require retraining on both sides of the stethoscope. 

The challenge for today's patients is learning how to read and use the chart in healing ways. Until clinicians embrace the notion of patients reading their medical charts, patients may continue to face obstacles to obtaining their charts and using them in healing ways.

I now believe that both clinicians and patients will benefit when clinicians take advantage of the increased transparency of open notes to strengthen clinician-patient bonds. Chart notes that reflect effective and compassionate communication between patients and healthcare professionals can help pave the way for all patients to become Healthy Survivors.

Comments

[Phil Donnelly-Rooney]

My experience of patients reading their records is that they don't realise that some comment is professional opinion, which differs from their own.

[Shea Steinberg]

Dr. Harpham, I too agree that both the patient and the doctor will benefit from chart access. A recent survey done by GFK Roper, commissioned by Practice Fusion http://www.practicefusion.com/pages/pr/patients-report-inability-to-access-own-medical-records-as-top-concern.html, showed that concerns about access outweighed worries about inaccuracy, theft, accidental destruction, ER availability or missing referrals. When the patient has the opportunity to review certain aspects of their charts, they have concrete control over their own health. Practice Fusion's Electronic Medical Records system includes a portal for patients to access their records in real-time.

From a recent visit to my own doctor, I realized the need for chart access myself. Once I left the doctor it was hard for me to explain my diagnosis to my family, since I only had my memory to go on. BUT if I had access to my chart I would have been able to not only share the information, but also research my own data.

Shea Steinberg
Practice Fusion
http://www.praticefusion.com/

[Wendy S. Harpham, M.D.]

Dear Phil Donnelly-Rooney,

Interesting point: In medical situations where definitive tests are unavailable, a physician's diagnosis is a judgment call. Patient's need to understand the limits of some diagnoses.

Thanks for the comment. With hope, Wendy

[Finn]

My biggest concern about Open Notes is it seems to require medical records to serve yet another purpose, in addition to the doctor's needs, documentation in case of legal action, and documentation for insurance billing (the element most likely to introduce distortion and outright fiction into the record). I'm reading in other blogs about issues raised by EMRs, such as seas of checkboxes checked off mindlessly because the EMR software or the insurance company require it, and endlessly maintained lists of short-term problems and medications like sore throats and antibiotics that swamp vital information like cancer histories and chronic conditions requiring life-long treatment. This makes me worry that in the attempt to make medical records serve too many purposes, they will end up serving them all poorly.

My preference is that my doctors maintain medical records that are primarily useful for THEM as they provide care for me. My ability to understand what's in my record is secondary and, I think, largely my responsibility if I wish to read it--which, I admit, I often do because I find it interesting.

[Wendy S. Harpham, M.D.]

Dear Finn,

For the reasons listed in this series' early posts, plus the reasons you list in this comment, my initial bias was against open notes.

But I can't imagine the progress toward open notes reversing in the current political, financial and cultural milieu.

Hence my new stance: Taking any energy I might have spent resisting the change and refocusing it on figuring out how to help notes serve both the patient and the patient's healthcare team optimally.

As I work my way through that challenge, I'm sure to share on the blog what I'm learning.
With hope, Wendy

[Finn]

Oh, I agree. I'm not arguing against open notes, just arguing that we should prioritize which audience's needs take precedence. I think the doctor's needs should be top priority, with the patient's needs a close second and the other audiences well behind.

[Wendy S. Harpham, M.D.]

Finn,
We agree.
I'm currently working on a column about how to take care of priorities without undue harm to patients.

If you want to see what I wrote so far on this topic to oncology professionals, you can read a pre-pub edition of my column here (you might have to scroll down, depending on how soon your check it out):

http://journals.lww.com/oncology-times/blog/voices/pages/default.aspx

With hope, Wendy