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What If Patients Read Their Doctors' Notes?

August 4, 2010
by Mark Hagland
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Late last month, the Los Angeles Times published a story whose news hook was a development taking place at Beth Israel Deaconess Medical Center in Boston. There, leaders have launched a pilot program this summer involving about 100 primary care physicians, and called the OpenNotes Initiative, in which about 25,000 patients will soon be able to read their doctors’ notes on a secure Web portal. Patients and their doctors will then fill out questionnaires on whether the experience of allowing patients to see their doctors’ notes ended up improving physician-patient communication.

As the LA Times reporter Shari Roan asked in her July 20 article, “If doctors know their patients are reading the notes, will they write as candidly as they might otherwise? After all,” she went on, “doctors and nurses use their notes to remind themselves about a patient’s unique characteristics and medical histories. This can mean something like, ‘Mr. Smith is typically in a foul mood and is convinced he’s going to die.’” Precisely.

So it will be fascinating to see what happens in Boston. I think the fact of some patients eventually seeing their physicians’ notes will have been an inevitable development, given the forward march of automation, and the (gradually) increasing transparency of patient care delivery and clinician-patient communications.

That having been said, there are inevitably unforeseen consequences to every step forward of clinical IT progress. In this case, we’re confronted with the potential conflict between two “goods”: the right of patients, as healthcare consumers, to know as much as possible about their care, and to be as involved as possible as participants in their own care management, versus the value that physicians and other clinicians derive from being able to communicate clearly with one another, as clinically appropriate, and even more fundamentally, to be able to recall precisely their individual patients’ stories in order to deliver optimal care. So the fact that “Mr. Smith is typically in a foul mood and is convinced he’s going to die,” though perhaps quite an outlier in terms of what is typically notated by doctors in the patient record, might very well be extremely helpful to Mr. Smith’s doctor, at a moment when s/he needs to recall key elements of Mr. Smith’s story, in order to assess his condition and make critical decisions about his care.

Ultimately, the path that healthcare is going down, and must go down, is one towards greater clarity, transparency, accountability, service, and collaboration between clinicians and their patients, for patients’ good. It will be fascinating to see how the countless “wrinkles” that will emerge as we move down that path end up getting worked out and resolved. I think that if everyone agrees that improving the care of patients and better serving patients and their families are the most important goals, we will collectively get to where we need to go; but no one should believe for a nanosecond that there won’t be multitudinous bumps along the road.

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Comments

Joe,
I absolutely loved your comment! And it was really interesting to read about what the IBM folks did and how they did it. Fascinating to analogize between medical "shadow charts" and corporate ones! I agree with you that the kinds of things you described above can't be kept in people's headsand least not comprehensively or reliably. This is a challenge that will somehow have to be worked out, probably iteratively, as everything is done, in health care!

Best, Mark

There was a recent interview on Science Friday with Tom Delbanco and Sara Fazio, both of whom teach at Harvard Medical School and practice at Beth Israel Deaconess Medical Center, on the OpenNotes project. You can listen to the podcast recording of the show here:

http://www.sciencefriday.com/program/archives/201007305

It is definitely worth a listen. One of the points they make is that open notes seems to result in better communication with the patient and less medical staff time explaining and following up post-visit.

Mark,
Private, personal note cards are part of the basis of great customer service and great management practice. That's true for both business management and medical practice management.

When I joined a major HCIT vendor in 1995, all of their IBM-trained senior executives called me by my first name with apparent ease, asked about my wife, by name, without hesitation, knew that I didn't have any kids at the time and avoided what could have been a sensitive area (such as infertility, preference, or other highly personal issues), did it all with eye contact, and did that routinely and daily with dozens of people internally and more outside the company. There were more than a half dozen such former IBMers and the style was noticeably consistent. Superficially, it was very casual.  Fifteen years later, when we pass by chance in an airport, at HIMSS, or elsewhere, they reflexively call me by name and reference safe yet personal things.  Their shadow charts on me, as a result of their prior use, were internalized in their heads.

Their Anderson-trained, senior executive counterparts similarly prided themselves by not investing in those behaviors of friendly human relations, delivered with informality. Interested readers should know that these behaviors, are explicitly elaborated of course in Dale Carnegie's How to Win Friends and Influence people from the 1920s.  (The former Anderson folks must all be deceased, retired or incarcerated; I never see them.  Ever.)

The machinery to pull off this impressive "friendly" or caring human relations behavior requires shadow charts or their equivalent. For the IBM guys at the time, it was feverish entry of information into their Palm Pilots, at the first moment they were alone, usually back in their office or car. Or, some of these guys worked entirely on paper. Their administrators printed out their email and notes. They scribbled their people notes (shadow charts, since these didn't go to HR or to peers) and the administrators entered them into their contact systems. I'm not kidding.

The business regions headed by gals and guys who used "shadow charts" far out-performed those how didn't in both sales and employee retention.

It's not possible to keep track of these things reliably in our heads.  Short term memory doesn't work that way.  If we value these behaviors and basic management competency, shadow charts are essential. Same for having a meaningful doctor-patient relationship of the first or second tier variety (See Erica Drazen's model for next generation healthcare delivery for tier reference elaboration.  The "Bottom Line" graphic below is truth #4 in the linked presentation.)


Would a sane person want to push these shadow notes to an HIE?

Should we add a category for these high-touch, high-trust issues to the now mandatory, "maintain a current problem list" MU requirement to our transparent EMRs?

Should we add clinical documentation templates and picklists to our EMRs to speed capture of personal issues that are not necessarily tightly associated with medical conditions?


If you answered "no" to any of the above, you arrive at the need for shadow charts. We don't demand that level of transparency in any other industry that I'm aware of, even though disclosure, legality, and use of public funds are often similar issues.

What do you think?

Mark,
Thanks for bringing this to our attention, and pointing out what the democratization of content means for some EMRs.

It calls to mind my learning about shadow charts. In large AMCs, it is not unusual in the paper world for doctors to maintain their own patient visit records, apart from the institutions chart for that patient. These shadow charts, being for personal use only by the doctor (not even his/her colleagues), allowed the doctor to carry information like "patient going through divorce," "experiencing stress related to criminal activities of their child," etc. These contextual issues were part of the health situation of the patient but were not necessarily medical.

The questions raised about shadow charts come to mind as we ponder open access to, or said differently, shared records. Re-purposing has hard to know consequences.

Joe,
Thanks so much for your comment. The "shadow chart" phenomenon is really fascinatingand it makes me wonder whether it can really continue in the age of the EHR. Legally, might there not be a problem with a shadow chart at a time when everything is supposed to be transparent and appropriately available to clinicians and to patients and their families? I'd be interested in your take on that.

Mark Hagland

Editor-In-Chief

Mark Hagland

@hci_markhagland

www.healthcare-informatics.com/blog/mark-hagland

Mark Hagland became Editor-in-Chief of Healthcare Informatics in January 2010. Prior to that, he...