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Why I Still Don’t Have an Electronic Copy of My Medical Records Six Months After Asking
I decided in June 2015 to go through the exercise of requesting an electronic copy of my medical records. They’re from an Epic-using, Most Wired-winning, EMRAM Stage 7 academic medical center at which my only encounter was an unplanned, uneventful one-night stay while traveling. I wanted to see how the records request process might work for the average patient.
I also tried using the hospital’s MyChart portal to look up my own records as a second experiment. That’s a different process managed by the hospital’s MyChart support team. I was not successful since my visit was not listed and the polite but baffled technician couldn’t figure out why. The technician did not offer to research the problem further.
Day 1
The records request page on the hospital’s website offers two options: dropping by personally to the hospital’s health information management department (which they clearly prefer) or downloading, completing, and faxing a form. Scanning and emailing the signed form was not possible, they said – it has to be faxed. Requests for images must be made separately by calling a different telephone number.
The form is complicated since it was primarily designed for patients who want to give someone else access to their records, such as for a workers compensation claim. The hospital really should create separate forms to avoid awkward references to “the patient” when it’s the patient making the request. It also asked for “patient medical record number or other identifiers” which hospitals frustratingly and somewhat arrogantly expect patients to learn and remember.
I completed the paper form as best I could, but it was not easy to figure out what they were looking for. Then I had to scan the signed form and find an online fax service to send it to the HIM department’s release of information fax machine.
The paper form did not provide an option for how I wanted to receive the information, stating flatly that paper copies would be mailed and that an unstated per-page fee would be charged by its contracted release of information vendor (it’s scary to agree to pay the fee upfront without knowing how many pages are involved or what the per-page charge is). It didn’t ask how I preferred to be contacted (not that it mattered since they never contacted me), but it did ask for a telephone number and physical address, again oddly worded since the multi-purpose form isn’t intended for patients only, with fields such as, “Phone (if known)” as though the patient might not know their own telephone number.
Day 11
I called the hospital’s HIM department since I hadn’t heard back from my request. They said they hadn’t taken any action because I hadn’t provided dates of service for my one and only encounter with the health system (since I couldn’t remember the date – it was more than a year before). They looked it up and said they would mail the records. I told them I wanted them in electronic form.
The HIM person said they don’t provide electronic information to patients, only to physicians. I said they were obligated to give me an electronic copy if I wanted it. She said she would get back with me after she talked to her supervisor.
Day 13
I hadn’t heard back from HIM, so I called them again. The supervisor repeated that they are not obligated to give patients electronic copies of their records and would provide only mailed paper copies. I repeated that they are indeed obligated to provide electronic copies. I said I would file a Office for Civil Rights complaint if they refused. Which they did, again.
I filed the OCR complaint. It was an easy online form to complete and I received quick email confirmation that it had been received.
Day 39
A letter-sized envelope arrived in the mail from the hospital. My name and address were scrawled nearly illegibly on the front with no indication of what was inside. I opened it up and there was my visit summary, contained on two pages front and back as printed off from the hospital’s Epic system. The hospital didn’t include a greeting or explanation or anything to indicate why they had sent the copies – it was just two Epic-generated pages that I finally figured out. I can’t imagine the average patient receiving the same document and making sense of it. At least they didn’t charge me for the two pages.
Day 211
I received a letter from the Office for Civil Rights informing me that my complaint was being closed without formal investigation. Instead, OCR said it had decided to “resolve this matter informally through the provision of technical assistance to the hospital.”
I haven’t heard from the hospital. I still don’t have an electronic copy of my records. My visit still doesn’t display in MyChart.
I invite readers to try this same process with their hospital or physician practice and let me know how it goes.
Please ask the hospital to send your electronic record to you on a CD, and let us know what happens with that request. It should be in the Continuity of Care Record (CCR) format but bet it isn’t! TPD!
Depressing story, and they clearly picked the wrong guy to jerk around! While I don’t think this is an anomaly, I would love to hear from other readers how common they think it is. I know for myself I just went to my provider’s patient portal (a large ambulatory practice using Epic) and was able to download a complete summary in pdf and CCD/xml formats. It also allowed me to choose the level of encryption of the downloaded files and set my own decryption password. My wife gets her care at a large AMC nearby (also on Epic) and we were able to do the same with her record. When my mother was ill last year she had to see a number of providers on different EHR systems and we were able to access her records pretty easily in each of their portals, except the VA patient portal. I guess it could have been easier if all of her records could be accessed through a single portal or app, but honestly, as she approached end of life we were just grateful that all of us siblings had online access to her records.
I had the same thing happen with my mom’s records. The funny thing is, I got more hospital records, more detailed records from her Primary Care Physician than I did from the hospital. Something is not right.
It sounds like it is time to name and shame the responsible hospital… Enough time has passed.
In September, 2014 I requested an electronic copy of my two hospitalizations at BIDMC and was told at that time that an electronic version was not an option. A month later, I received instead a 161 page paper printout of my records.
Last week, I requested an electronic copy of what now had grown to five hospitalizations at BIDMC. Although it required an extra phone call, the process was easy. Within a few days I received a secure link to download my medical records and was able to do so without difficulty.
All my records were bundled into a single PDF, 604 pages in length. The PDF was organized by categories and then dates. The categories were: Discharge Summary; Operative Reports; Notes (including initial notes, progress notes, consultation notes, nutrition notes, physical therapy and minor procedures); Reports (including echo cardiograms, exercise tolerance tests, and pathology reports); and Labs (including microbiology and special studies). Unlike the other documents, each lab was displayed by type, (for instance, CBC) and then the values and dates were presented in tabular format.
Even in PDF format, the electronic version of my chart was a huge improvement over the previous paper version in terms of my being able to navigate and locate pertinent information.
A major issue is whether a natural language processing (NLP) parser would be able to break up my 604 page PDF medical record into the individual component documents, each with its date, document name, document title, department or specialty, author, and requesting physician. If so, then the documents could be ordered chronologically and presented graphically using a timeline-based user interface such as the TimeBar, where both the temporal relationships and subject matter of each document are displayed visually.
Are there any NLP parsers capable of doing this?
Dr, Rick,
The natural language processing (NLP) parser is in the works but it’ll be a late 2016 or early 2017 availability. ICD-10 Procedure Codes are the 2016 focus for all of us here in the U.S.A. TPD!
Keep in mind that your provider may have required HIM support from Epic to provide this for you, and that they might be waiting for the 3rd one they’ve had so far in 2016 to get through training.
I had a very similar experience. Trying to get a copy of my own electronic health record was almost impossible from a very well known and respect Epic facility. The OCR was no help at all, despite their constant encouragement for patients to ask for a copy of their records. It was also challenging to have the records transferred to my physician, despite the fact that they are also an Epic user. The hospital system recommended that it would be best if I took printed copies of my record and hand carried them to my provider or they offered to fax them. So much for electronic exchange…
I wonder if your hospital/practice participated in Open Notes as many such institutions now are doing would that have satisfied needs? Seeing the visit notes from the physician would probably solve so much of this. They are your notes. This is your record.
To everyone,
At the barest minimum each patient should ask their provider for their Medical Record Number (MRN) where services are provided at primary care, clinics, and hospitals. Write the MRN on your checks when paying bills for services and keep the MRNs on a list in your wallet. TPD!
A loved one recently had two acute care episodes and it was my job to get a copy of the records. Two totally different experiences.
One hospital charged me $60 for an abstract. And yes, it was paper. The second hospital insisted on a trip to medical records (HIM) as part of the discharge process. Greeted with open arms in HIM, consents signed and a clean copy of records were received within 2 weeks — no charge.
Bottom line–every hospital manages their release of information (ROI) process differently. Some charge, some don’t. Some outsource, some in house. Some paper, some CD or secure online portal login.
As background, there are many steps taken by HIM departments and ROI vendors to ensure privacy, security and compliance. Best practice is to provide patients with an abstract of their record: every single data point would be overwhelming.
While the EHR portal provides some information, it is rarely a complete abstract of your hospital stay. And most EHRs do a terrible job of producing a legible copy of patient records. EHRs were designed for bits, bytes and discrete data. They weren’t designed to produce an easily readable patient story.
The good news: about 50% of the records sent out from HIM departments today via the ROI process are delivered electronically. We’re getting there, but there is MUCH work still to be done.
Good thing CareSync was on it and got it right away for you 🙂
Also as far as how common it is, most portals only give a small piece of the information and there are a LOT of details in the pieces that are not included – minor things like office notes, radiology reports, op reports, etc.