Should patients have direct electronic access to their oncologist's progress notes?

Should patients have direct electronic access to their oncologist's progress notes?

Robert S. Miller, MD, FACP, FASCO

Sep 05, 2010

The Annals of Internal Medicine recently described a novel demonstration project called OpenNotes taking place at Beth Israel-Deaconess in Boston, Geisinger in Pennsylvania, and Harborview in Seattle, in which patients are given electronic access to their PCP’s progress notes in the EHR after a visit. The project, which apparently is just getting underway, involves 100 physicians and potentially 25,000 patients, and it looks to gauge patient and provider reactions to the experience and willingness to continue after the year-long pilot phase is complete. The value of giving patients direct access to the medical record has been suggested as far back as the 1970s, and the passage of the HIPAA legislation codified patients’ rights to such access. However, few patients exercise this right in anything other than a retrospective fashion, and rarely is the progress note an interactive document used to improve communication and care, as envisioned by the Institute of Medicine. Many patients already have electronic access to their lab results and x-ray reports through patient portals connected to an EHR, and electronic communication with providers is increasingly being used. Access to this part of the medical record is thought to be the logical next step.

Table 1 of the article lists potential advantages and disadvantages. The most obvious advantages are greater patient participation in their own care, enhanced patient insight into the medical decision-making process, and patient contribution to the accuracy of the medical record. Potential disadvantages are many, and the article summarizes these thoughtfully. The Annals of Internal Medicine podcast for that issue (July 20, 2010) features an interview with two of the paper's authors and is a very helpful overview. It is also worthwhile reading some of the coverage and commentary on this project, including Dr. Pauline Chen’s New York Times article and a series of blog posts on the Society for Participatory Medicine’s blog, among many others.

What if this experiment were tried in oncology? How would patients respond to a differential diagnosis captured in a note, and how many would fully grasp the difference between a hypothesis and a deduction? Would patients come away from the experience with a more realistic view of their condition when dealing with metastatic disease, or would access to the note lead to despair? How would patients react to the inevitable medical jargon and imprecise language prevalent in most medical records? Would such access lead to a torrent of phone calls and emails to physician offices, seeking clarifications and explanations? And how many oncologists would be comfortable allowing patients to read their documentation of a typical oncology visit, particularly when the note may starkly describe tumor progression and impending end-of-life issues? How much of a Hawthorne effect would there be – would physicians “clean up” their documentation if they knew their patients would be accessing the same document? Would clinicians be even more focused on malpractice and negligence issues? Would oncologists view open notes as a series of teachable moments or, if required someday, would they become yet another unfunded mandate and inconvenience?


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Richard S. Leff, MD, FACP

Sep, 07 2010 5:43 PM

As you have noted, patients already have access to their progress notes, by request. In general, these requests occur when the patient or family is uncertain about the quality of the care they are receiving. This has resulted in a negative connotation for note sharing.

Routinely handing the patient a copy of your current note (if you are really good with the EHR) or most recent note would undoubtedly change record keeping. Progress notes within our medical records have served 2 purposes in the past: 1) to inform me, my partners and my staff about what I am thinking and doing; and 2) to inform care givers outside our practice-- other managing physicians, nurses, etc. Frequently my notes for these 2 purposes have not been the same, with more explicit expression of my plan and reasoning in the notes that were sent outside the office. If patients routinely receive copies of their notes, it will change the content further, since I would feel obliged to express my plan and reasoning in a way that the patient and family could understand to avoid confusion, misinterpretation and related anxiety. Although this might represent an improvement in record keeping, it undoubtedly would make it more extensive and time consuming. On the other hand, handing a patient a note and being willing to discuss and explain the contents would give us another opportunity to evaluate understanding and to educate. To the extent that this can be very effective in allaying anxiety and improving the therapeutic relationship as well as improving compliance, it could be a very positive experience. Perhaps ASCO could organize an OpenNotes type of demonstration project for Oncology. Nothing speaks as loudly as data. While that is going on, someone needs to work out the issue of reimbursing for the time and cost of routinely creating significantly more detailed notes.

John Vernon Cox, DO, FASCO

Sep, 11 2010 1:21 PM

I have tried this in a crude way. I hate to admit it, but I am not always punctual. I tend to talk a lot with patients - and admit I get slower as the day progresses.

Sooo, as a way to engage folks waiting, I began giving the patients copies of my 'last' note to read as they waited and comment back to me.

This was met with great enthusiasm by the patients. It only engendered good questions and was a great way to focus on important issues during the visit.

It uncovered many errors in the notes -- which I would correct - mostly dates, changes in social history - but at times very substantive changes.

My biggest insight came due the questions that revealed that I had not communicated as well as I thought. Sometimes the goals of care were not understood or even the stage of the disease (this despite the fact that I always write / explain stage / prognosis and benefit of therapy on a sheet and give to the patient when we initiate a treatment regimen).

I did not find much in the way of agony / nor were patients upset with my (sometimes) awkward syntax or revealing judgments that I recorded.

I still do this on an ad hoc basis, but not systematically. After reading Bob's note and the Annals article - maybe I should get back to it!!!

It is a practice I would recommend to my colleagues.

Robert S. Miller, MD, FACP, FASCO

Oct, 07 2010 10:21 PM

Internist, lymphoma survivor, and author Dr. Wendy Harpham's thoughtful take on OpenNotes and the impact access might have on oncology patients in the current issue of Oncology Times - read the article here

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