The other night I participated in a very useful Google+ hangout with Adrian Gropper, Michael Mascia and Michael Chen. The discussion focused on a subject I think is incredibly important: the patient-centered health record. Unfortunately, this topic is hard to discuss without drowning in technical terms and acronyms. I consider myself fairly tech-savvy and still struggle.
A (55 minute) YouTube video is here: Click here
I think it is worth watching. before watching it, consider reviewing the following basic information to help set the stage, first without tech terms or acronyms, and then repeated with some of the key jargon.
The current EHR model is that each office or institution owns and manages an electronic record that contains information about the patients in that system. Despite the obvious need and lots of talk, there has been little actual progress towards making these separate and mostly proprietary systems ‘interoperable’ and therefore able to share information. The result is that clinicians routinely work with incomplete or outdated information, patients are locked into their home system, and it is extremely hard for patients to access their own information in any meaningful or useful way. Care is less safe and less reliable, patients are prevented from actively managing their care, and clinicians are frustrated.
This summer an article in USA Today talked about Regina Holliday’s efforts to make the medical record more easily and promptly available to patients so it becomes as a tool patients use as they engage in co-managing their own care. Her cause is just and her story is compelling, so I was dismayed at the pushback saying: Not so fast. There are lots of errors and ambiguities in the record, so it is in everyone’s best interest to make the record hard for patients to obtain.
What a concept.
The commonest examples listed by opponents of patient access to patient information reflected a combination of poor communication with patients and concern about the extra work that transparency might require for institutions and clinicians. For example:
“…the majority of patients don’t understand differential or provisional diagnoses and want those removed, because they say they are an error. The majority of patients don’t understand trade versus generic drug names, and want those removed because they are an error. The majority of patient’s don’t understand autopopulation of fields (when you click normal) and say the doctor didn’t ask me those things, and want them removed because they are an error; the majority of patients don’t understand spontaneous abortion, and definitely want that removed it, because they never had an abortion; the majority of patients don’t want “dependence on” anything included in their records, and want it removed because it’s an error…. they are very unhappy with all the errors in their medical record. And then, there are the legitimate errors due to poor documentation on admission, hospitalists who see the patient once and don’t review the record adequately, and nursing staff who just want to get their charting done and go home.”
Wow! Everyone who works with medical records knows that the record is full of both errors and ambiguity. The question is what to do about it. There are two general categories of response.
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.