There is a growing group of articulate and engaged patients committed to getting access to all their medical information in order to be better positioned to work collaboratively with their clinical teams. Published studies like the OpenNotes project have consistently shown significant benefits and a lack of serious problems. Health care systems are slow to change and just beginning to understand both the need and value to this more transparent and collaborative approach.
My institution, for example, is not ready (or even interested) in anything approaching opening chart notes to patients. In fact, although our secure portal will be launched in the near future, there was some resistance to making even problem lists, medication lists, lab and x-rays available through the portal.
That need not prevent individuals from contributing to change. A few years ago I began providing every patient with a copy of their office visit note as they left the office after their visit. The intent was for us to do the assessment and plan collaboratively and make sure they have a copy of our (collaborative) plan. Patients have been very appreciative, and use it to share the assessment and plan with family and consultants, and as a reference. A few bring it back at the next visit with notes on it about what they did and what happened.
To the objectors who say that one cannot be honest in a note if the patient is going to see it, I say: balderdash. (Actually, what I say is much stronger…) For one thing (the smaller point) the patient is already allowed to see it if they but ask. More importantly, this argument depends entirely on the principle that the clinician knows best and needs to keep secrets in the interest of the patient. What I have experienced is a variation on the advice I got many years ago regarding relationships: if it’s important, then it’s important enough to be open about and deal with. If you aren’t willing to deal with it openly, you are not allowed to save it up and spring it on your partner (patient) later.
I have found that it changes the nature and quality of conversations about difficult topics. First, it means I have to be objective and neutral about the issue, separating ‘my’ stuff from the mix. I can’t get away with labeling a patient in my chart as a symptom magnifier or minimizer, having poor insight into their contribution to the problem, describing pain that does not fit with the setting or findings, making poor choices, non-compliant. Instead I have to describe what I am seeing and why I find it important or of concern. This generates good (and trusting) conversations – and progress. More than a few patients have commented: I like that you put that on the table – I can tell when my x-ologist isn’t being straight and it pisses me off. Clinicians who think patients can’t tell are deceiving themselves.
I have not found psychiatric or social issues to be much of an exception. In fact, I have been surprised at how often this approach has been the key to successfully addressing psychosocial issues.
The biggest challenge has been the patient with a sensitive problem (think about a 16 year old there for ? chlamydia) whose friend or relative may be in the waiting room. The solution has been simple: “Don, just to be clear, I usually give patients a copy of the note we do, but if you’d rather not, just say so. Or I can print it and go get it and give it to you here instead of at the front desk.”
There have been some issues. A few consultants complained that they are getting pressure from my patients to do the same. (I simply said, tell me if it is a big problem and I will send my patients elsewhere. That was the end of it.) I feel obligated to spend time every morning before my day starts ‘cleaning up’ the chart. The pre-visit work actually serves two purposes, and while it is work, I can’t imagine NOT doing it. I can review the reason for the visit, collect and copy/paste or abstract important pieces into the note (this helps us at the visit and the patient at home later), find errors, clean up (remove the penicillin from last year’s strep throat from the med list), and look for things for which the patient is eligible (mammogram, TDap) or problems that have been lost to follow up (gout, on allopurinol, no creatinine or uric acid in 18 months). This work significantly improves my ability to focus on the patient and our work during the visit.
And, I would be remiss if I failed to mention accuracy. In addition to narrating what I am typing so patients can correct it (“No, the pain started two weekends ago, not last weekend.”) patients call to fill in the blanks or correct errors. Lots of great family history and details about previous medical events become part of the record.
From my perspective, framing it as whether or not the record/note is open misses the point. The point is, the collected information, assessment and plan that the patient and clinician are basing diagnosis and treatment on should be used as a collaborative tool not as the clinician’s private record of why they did what they did (TO the patient). That’s called a diary, not a medical record.