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.