The big news last week was Open Notes – the trial underway at Boston’s Beth Israel Deaconess Hospital where patients have unbridled access to their electronic records. After a summary of the project was published in the Annals of Internal Medicine the story made headlines. The news: While patients have always had the right to their own records, Open Notes improves access in an unprecedented way.
Go here and read the overview of what the researchers have in mind. It’s a balanced look at what this all could mean.
Just a couple of first thoughts on open source records:
How should we be spending time with patients?
I wonder how we should be spending our time with patients. It’s a regular thing in my clinic: Parents hand carry lab results from their referring pediatrician to me. And, of course, they look at those results. They worry. But the problem is that even on something as simple as a complete blood count (CBC), the results invariably contain values that, while ‘out of range’, are irrelevant to their child’s condition. They want me to justify why a LabCorp’s computer flagged their growing child’s alkaline phosphotase as abnormal.
But shouldn’t I take the time to go through those results with the parent? After all, don’t I care? Of course I care but the time I spend with a parent should involve dialog surrounding real diagnostic and therapeutic issues related to their child. Explaining why an irrelevant computer-calculated blood index is out of range is a waste of that parent’s precious time. Unfortunately a parent doesn’t know this. Perhaps more importantly this use of time is unfair to the child who I serve on a level equal with her parent.
This issue needs to be reconciled in a practical way. Unlimited access needs to be balanced with the unlimited demand to explain.
If transparency is king, trust is queen
I’m not sure that the parents who hire me will choose to spend their evenings pouring over their child’s record. Of course that should be their prerogative. But I suspect that most trust that I’ll help them navigate the data and thoughts buried in their child’s record.
Immediate access or not, patients ultimately need to partner with someone unequivocally trusted to act on their behalf. Despite the internet, the hive and facilitated patient networks, the body of personalized technical information contained in that medical record needs a docent.
There will always be those who choose to chase and investigate and there will always be stories about how unfaltering personal will saved a life in the hands of an irresponsible physician. But in the end there has to be a relationship founded in trust.
Sometimes I wonder if we have a provider problem not a transparency problem.
Where this goes, nobody knows
Access is good. But I wonder how Open Notes will measurably change care and outcomes – and not through the calculator of a Harvard statistician but in my clinic in The Woodlands, Texas with my young parents. I watch them, think about them, and try to put their experience into the context of what I hear in the social health dialog.
As I’ve suggested in the past, I think there’s a disconnect between those of us who think about this stuff and patients we treat. To some extent our social health conversation carries on in relative isolation. Our network sees and feels the world of health through the eyes of a small, vocal minority. We like to believe that all doctors are like Berci working in hospitals run by CEOs like Paul Levy caring for patients who all think like e-patient Dave.
The authors, by the way, make it pretty clear that we really have no idea how this will pan out (“the implications are broad and filled with uncertainty”). But let’s follow this and see where it goes.