Digital data paves the way to transparency in medicine

Dr Eric Topol

| Disclosures | October 11, 2012
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As much as some cardiologists might dislike the idea (and even resist it), two new studies indicate that digital data—and the patient's access to it—are contributing to a new era in healthcare in which transparency contributes to better outcomes. Let the sun shine in!

See also:

Joynt K, Blumenthal D, Orav EJ, et al. Association of public reporting for percutaneous coronary intervention with utilization and outcomes among Medicare beneficiaries with acute myocardial infarction. JAMA 2012; 308:1460-1468. Abstract.

Moscucci M. Public reporting of PCI outcomes and quality of care: One step forward and new questions raised. JAMA 2012; 308:1478-1479. Abstract.

Delbanco T, Walker J, Bell SK, et al. Inviting patients to read their doctors' notes: A quasi-experimental study and a look ahead. Ann Intern Med 2012: 15;461-470. Abstract.

The Digital Doctor Series on New York Times

Public reporting reduces PCI rates in AMI patients

OpenNotes: Of course patients should have ready access to their medical record


Eric Topol MD: I know there is a lot of sunlight in this segment. But it's symbolic because we're going to talk about transparency in the era of the digital doctor.

I'm going to get into two articles: (1) in JAMA from October 10, 2012 on PCI in acute MI with public reporting; and (2) in Annals of Internal Medicine, about the OpenNotes project (office notes for patients).

Before I get to that, I want to call your attention to the "The digital doctor" in Science Times, in the October 9, 2012 issue of New York Times. It's a full issue of Science Times dedicated to the digital doctor. What we're going to talk about today is just that: transparency, digital information, and consumer empowerment—or consumer access.

First let's get into the JAMA study: This included about 50 000 patients in places where there was public recording, where PCI was performed in acute MI, and another nearly 50 000 people who were not in that setting (that is, PCI was done without public recording). While there was no difference in outcomes, there was a big difference—anywhere between a 20% to 30% reduction of PCI use—when there was public reporting. That's pretty striking. That's a marked reduction if you say "unnecessary procedures," or at least what was modulated by the need for public reporting.

Now let's turn to the OpenNotes project: This was done in three centers: Boston, Seattle, and at Geisinger in Pennsylvania. It included over 13 000 patients and over 105 internists. Basically the question was: "If I give the office notes to my patients, will that actually make things worse? Will they get confused and worried? Or will their health be enhanced?" The data were overwhelmingly positive for the fact that their health was enhanced: around 80% felt more comforted, there was a 60% to 65% improvement to medication adherence, and as far as worry or confusion, it was only reported as 1% to 8%.

This is a striking result because now, in these three centers, the sharing of office notes is going to be advocated. It's the right of any patient today in the US by HIPAA standards, but is rarely exercised or even known, for that matter. It's a big break. Physicians who went into this circumspect that, for instance, when whey write "SOB" in their notes (or type it in the EMR), when the patient sees that they may think that they are being called an SOB! But, in reality, obviously, as we know, there are all of these acronyms—in this case, "shortness of breath".

I believe this is a landmark paper. I don't know many cardiologists who give their notes to patients. Most cardiologists today are not into that. And I would suggest that this transparency, that what we are seeing so far in office notes and public reporting, is the future of medicine. When there's digital data it's great to be able to share that. Good things come out of that, that's the digital doctor (one component of it, of course, that's not taking into account genomics and wireless and all the other things that are part of that story).

I'll be really interested in your thoughts. Obviously, score-card medicine is not especially popular among cardiologists, and OpenNotes is really a turnaround from the usual medical paternalism (the protection from one's own information by a doctor walled off from the patient).

I am interested in your thoughts and comments, and critiques, as always. Thanks a lot for tuning in to Topolog. 

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Authors and Disclosures

Cardiologist, Dr Eric Topol, Editor-in-chief, and Director, Scripps Translational Science Institute, translates clinical research in cardiology to daily practice.
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