I first reported on the OpenNotes project in 2010 in a note discussing whether patients should be allowed to review their own hospital records (see: Should Patients Be "Allowed" to Read Their Medical Records?). It's rather silly that this question even needs to be raised given that HIPAA specifically gave patients the right to do so and even amend their own records. A later note stressed the importance of transparency of medical records in terms of promoting patient engagement (see: The Quest for Fully Transparent Medical Records and Greater Patient Engagement). A recent news article describes yet another step in patient engagement with OpenNotes with the opportunity for patients to annotate their personal health records (see: Hospital to let patients add to own EHRs). Below is an excerpt from the article:
Beth Israel Deaconess Medical Center is launching a pilot that gives patients unprecedented input to their electronic health records. Thanks to a $450,000 grant from The Commonwealth Fund, BIDMC will be one of the health systems to introduce OurNotes, the latest step in the evolution of the OpenNotes movement, which gives patients easy, online access to their doctors' jottings. This new engagement initiative will enable patients to write directly into their own EHRs.....The Commonwealth Fund grant will support work at five sites: original OpenNotes study partners BIDMC, Pennsylvania's Geisinger Health System and Seattle's Harborview Medical Center, in addition to more recent members Group Health Cooperative, also in Seattle, and Mosaic Life Care in St. Joseph, Mo.....At BIDMC, a multi-center team will work clinicians, patients and others on a user-centered design process, focusing initially on primary care."During this phase we'll be asking clinicians questions about what kinds of information they think would be helpful to receive from patients," said [a hospital spokesperson]. "Likewise, we'll be talking to patients to find out what kinds of information they would like to contribute to their records and their notes." Findings from that phase will be used to develop prototypes at each site and to conduct pilot testing that will pave the way toward formal clinical trials.
I have long been an advocate of direct access testing (DAT) whereby patients can order laboratory tests for themselves and family members on the web. The out-of-pocket cost of such tests is relatively low and often makes sense if one has a policy with a high deductible and high co-payments. However, the usual scenario in relation to DAT is for the customer to receive his or her results on-line or sometimes also in the form of a downloadable PDF file. It would be highly desirable to be able to upload such a file to a patient's personal health record including the name of the performing lab. This would provide a low-cost testing option to consumers with the results accessible in his or her electronic medical record for review by healthcare providers.