Gravis, Gwenaelle, Cristel Protiere, Francois Eisinger, Jean M. Boher, Carole Tarpin, Diane Coso, Maria-Antonietta Cappiello, Jacques Camerlo, Dominique Genre, and Patrice Viens. Full access to medical records does not modify anxiety in cancer patients. Cancer (May 23, 2011).
I think the title of this paper is clever, because based on where you come to this issue from, it will create one of two assumptions in your mind, either that full access to a person’s medical record “should” cause anxiety or that it “shouldn’t” cause anxiety. The answer from this study is that it does neither, so I guess either hypothesis in the reader’s mind will be disproved.
This study was started between 2003 and 2006 (! – a long time ago in Internet years, it’s not clear when it ended because it uses chemotherapy cycles as the end point), and involved randomizing patients to receive an actual briefcase that contained the following:
This briefcase included administrative data as well as the following reports: surgery, pathology, hospital- izations, nurse narratives, radiology and biologic reports, as well as overall medical and paramedical information concerning the patient’s treatment. The documents (sheets, imaging radiology, or compact discs) were given to the patient by the medical coordinator, who also provided explanations. Of course, the medical staff and nurses also provided the patient with information, although it was not standardized.
I find it interesting (and cool) that the commitment to provide this information included a commitment to make it understandable:
A medical lexicon and a user guide also were provided to the patient, who also was helped by the physi-cian and a paramedical coordinator in the handling and understanding of the various documents that were included in the dossier. The OMR was to be updated at each visit, and additional information could be mailed to the patient if appropriate.
And….the results were that 98% of the patients offered the chance to have full access chose it, and there was no difference in anxiety between the patients randomized to get their medical records by default versus the ones who needed a physician request to make it happen. Interestingly, it says 25% had “regrets” about accepting the full medical record.
We are in a fascinating time, I think, studying a practice that has little to no basis in science, which is denying patients access to their health information (or if you want to use some euphemisms, “Providing on request,” “Available for 73 cents a page”).
To this day I still don’t know:
- How the medical profession decided that patients should not see their medical records
- If any studies have ever been done showing a beneficial effect of hiding information/keeping secrets from patients
So if this is the case, why study something that was never proven to be useful, why not just stop doing it?
To think about this more, I took a little sojurn down medical memory lane, to learn the history of another famous procedure, in the history of Coronary Artery Bypass Graft (read this awesome article if you can) called the Vineberg procedure. The Vineberg involved implanting the internal mammary artery into the left ventricle for ischemic hearts – with little evidence for its benefit initially, it was nevertheless done, often with devastating results:
Patients who were operated on with Vineberg’s approach frequently died suddenly or within a few minutes in the immediate postoperative period as a consequence of a myocardial infarction clearly detected on the ECG. I always tried to be present at the autopsies.
And then, it was replaced by bypass, at the same time:
It was hard for us to stop using Vineberg’s technique because of our previous clinical experience with it.
I think this is instructive – it’s going to be hard for us to stop using “the denying access technique” because of our previous clinical experience with it. And maybe, maybe, the linked EHR linked to a PHR is the coronary artery bypass equivalent of the procedure that ended the anecdotally generated Vineberg procedure in information sharing….what do you think?
With special thanks to Danielle Leach (@teaminspire), who forwarded this article to me, based on our conversation at the Center for Total Health, in front of the My Health Manager alcove. This place to talk about health sure is generating great conversations!