I was beyond thrilled to learn that BIDMC (Beth Israel Deaconness in Boston) now has Open Notes – through their website, Patient Site, registered patients can access not only their actual medical records, but their test results! This is exciting news – and in great contrast to the walls that the Steward Medical Group (the VC group that took over the Good Sam/Caritas System, Quincy Hospital, Goddard Hospital, and some physician practice groups) has built around their practices, making it nigh impossible and quite expensive to get ANY access to your own records, test results, etc.
My advice based on my experiences of late – obtain copies of as much of your data while you can, it IS, after all, YOURS. You have paid for it already! Most docs will give you copies of tests, etc. that specialists are likely to need. It is SO necessary to have you test results handy when you go see specialists – hospitals aren’t sharing records freely, leaving the (expensive and arduous) burden on the patient to obtain this information on their own. Not having this info when you see a specialist causes huge delays in receiving care, testing, and additional outlay of $$ for that not-so-cheap co-pay to see the specialist AGAIN once the records are obtained.
Example: my records were held back from my prior PCPs office because they don’t use an EHR that works outside of the actual building (it’s just a database, not a true EHR) and actually SEND OUT the records to a non-medical copying company to make actual paper copies of the records and then, charge the patient for these hard copies, which, are not even given to the patient!! My new PCP had to wait until I paid the $55 ransom for a “partial” copy of my prior PCPs records of my care – and that was THREE MONTHS AGO. My new PCP (who has a completely automated true EHR system in which patients automatically get copies of test results, etc) is still waiting for my records to arrive from the Kinkos -esque place my prior records were sent. Thank goodness I made it a habit to glean as many copies of test results as possible from my PCP over the years -or I would be sitting in medical limbo with my bizarre chronic illnesses waiting for these records.
I can’t emphasize how important it is to maintain physical possession of as many medical records as you can – you will never know when a specialist will see them – or when a VC Group takes over a heathcare system and start withholding info that YOU need for YOUR CARE.
So…kudos goes to BIDMC. The Partners system (MGH, Faulkner, BWH, etc.) offer a similar option within their Patient Gateway, but not all notes nor tests are included. In fact, most of the “reports” just give an “accession number” and no actual report. (Note: even though I have been to MGH providers within the past month – NONE of my prescriptions, diagnoses or med allergies are up to date.) I can’t figure out why they offer a “link” to the information, but it isn’t actually there…But, hey, I guess its better than nothing at all.
Overall, it is a true joy to see Boston’s major health care systems embracing their patients and inviting them to become participants in their own health care.