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Tuesday, October 23, 2012



TALK ABOUT REVOLUTIONARY, SHOULD WE LET PATIENTS READ THEIR DOCTORS' NOTES?  In the first study (The OpenNotes Project) of its kind that I've seen, for one year primary care practices at Beth Israel Deaconess Medical Center in Massachusetts, Geisinger Health System in Pennsylvania, and Harborview Medical Center in Washington provide their patients with a link to the physician 'notes' part of the medical record.(2)  Among the study group, 11,797 of 13,564 patients opened at least 1 physician note. 77-87% of patients reported that this experience helped them feel more in control of their care; 60-78% of those taking medications reported increased medication adherence; 1% to 8% reported that the notes caused confusion, worry, or offense. 20% to 42% shared their notes with others.  Overall the volume of electronic messages from patients to their physicians did not change.
On the physician side, 3% to 36% of doctors reported changing documentation content, and 0% to 21% reported taking more time writing notes.
     Trouble ahead: 59% to 62% of patients believed that they should be able to add comments to a doctor's note. One out of 3 patients believed that they should be able to approve the notes' contents, but 85% to 96% of doctors did not agree. At the end of the experimental period, 99% of patients wanted open notes to continue and no doctor elected to stop. 

A PATIENT'S PERCEPTION (AN ATTORNEY WORKING IN THE HEALTH CARE FIELD): "I remember ... history when I hear doctors object to making lab reports or visit notes available to patients because they may cause pain and anxiety. No doubt they will in some cases, but then pain and anxiety are part of the human condition and are as likely to be produced by a sense of ignorance and powerlessness as by knowledge. The difference turns on who decides. People have myriad ways of protecting themselves from things they don't want to know. making information freely available doesn't necessarily mean that patients will be forced to learn what they'd rather ignore. The Internet is a model  here: Some people devour the plethora of medical information; others avoid it like the plague. If any generalization suffices, to treat patients like adults requires that we, not a well-meaning professional, make the choice between more and less knowledge...
     "Doctors are concerned that writing notes patients can read may take up valuable time and stimulate questions that in turn will take time to answer. Such concerns are serious, but data from the OpenNotes project strongly suggest that they are overblown. doctors already have to take notes and answer questions. The key here is not more or less time, but best practices. Is in not better in most cases to have an informed patient, one who can correct errors, clarify confusion, understand the effects of medications, and be able to discuss specific treatments with family and friends?...
     "Doctors may fear that openness will lead to lawsuits, but there is no credible evidence that patients will rush to the courthouse. Secrecy, and a sense that the doctor is distant or indifferent, stimulates litigation as much as a free flow of information. If that flow improves trust, the likelihood is fewer lawsuits. Make no mistake: Previously dormant errors will be uncovered--that's the way with more information. But to the extent that tho0se errors are substantial, a profession that prides itself on correcting mistakes can hardly oppose broadening the opportunity to expose them...
     "For an open system of information to realized its potential, physicians will have to make sure they don't overstep the bounds of their power, whereas patients will have to take more responsibility for what they know and do and, ultimately, for how their lives affect their health. Opening complicated systems to greater client participation always includes dislocation. Here, the benefits that come from a greater flow of information hold considerable promise for creating a healthier society, a result that is plainly worth the costs."

A JOURNAL EDITOR'S VIEW: "Use of electronic health record systems is increasing at a rapid pace, with the percentage of physicians using such systems in their practices rowing from 17% in 2008 to 34% in 2011 [mainly thanks to Obama]...
     "Although patients technically 'own' their medical records, processes for obtaining them have been arduous and many patients do not avail themselves routinely of this service. Physicians and other professional staff have therefore traditionally viewed medical records as primarily for their use, as a means of documenting care for future reference and of communicating with other providers, and have not worried much about how that documentation might affect the patient. Given this background, the physicians' apprehension about the consequences of having their notes electronically accessible to patients is understandable.
     "But a revolution is occurring in health care documentation with the widespread implementation of electronic medical records, particularly the development of patient portals. Patients, many of whom already have access to some electronic medical information, have become savvy consumers of online health information, and will demand more. The way that we as physicians view the medical records needs to change accordingly....
     "The OpenNotes project identifies a number of issues that should be evaluated to understand the full value of free access to physician notes. What is the effect on provider-to-provider communication if they modify their documentation practices because of concerns about patient reactions? Will this impair the ability of other providers to manage patients appropriately? If OpenNotes is expanded in scope, what is the impact on physician time and documentation?...
     "OpenNotes is a brave effort at pushing the frontier of patient engagement in their health. While an experiment like this raises concerns for many physicians, the strong message from patients is that it makes them better patients."

 COMMENT: This is perhaps a somewhat frightening view of the future. I think it is inevitable that this happens, and I personally am all for it. A doctor's visit should be a collaborative enterprise. The record of it is so important (since all details of the visit are forgotten by both sides pretty quickly). Patients should have the right to add comments, explain and clarify their story more, and to ask questions, if they have any. I certainly don't believe that patients have any rights to approve or veto the notes; instead they have a right to change physicians. Overall, writing notes with the notion that patients are looking over your shoulder should lead to a better doctor-patient relationship and higher quality information.
     The additional views expressed by a patient and a journal editor with very different perspectives nicely complements this innovative research. The bottom line is that patients clearly like this practice, and physicians, while apprehensive, are not finding any significant impairment in their work, and, in fact, at the end of this study, no physician opted to stop the sharing of medical records.
      Good health care has always been a shared enterprise between physician and patient. Errors and misunderstandings have always plagued our work and not enough time has often truncated the information that patients would have liked to share with us. This new way of using electronic medical records offers a solution to these problems. Physicians will inevitably step down from a high pedestal to a lower one, and patients will have to step up to more responsibility for their care. The result, if we all do our jobs with openness and tolerance, will be far better health care and ultimately far better health outcomes.

1. Delbanco T et al. Inviting patients to reader their doctors' notes: a quasi-experimental study and a look ahead. Ann Intern Med 2012; 157: 461-70.
2. Meltsner M. JD. A patient's view of OpenNotes. Ann Intern Med 2012; 157: 523-4.
3. Goldzweig CL. Pushing the envelope of electronic patient portals to engage patients in their care. Ann Intern Med 2012; 157: 526-6.


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