Every once in a while we write an article that creates a firestorm of controversy. Such was the news story about electronic health records (EHRs). We never imagined that people would be so upset about gaining full access to their health information. Many want to be able to see OpenNotes or clinic notes. Even more surprising was the number of mistakes people have discovered in their electronic health records.
Why Don’t People Read Their EHRs?
Most people never bother to access their electronic health records. That’s the conclusion of a study that analyzed data from over 2,000 U.S. hospitals (Health Affairs, online Nov. 4, 2019). The authors reported that only 10 percent of patients accessed their electronic medical record:
“On average, hospitals gave 95 percent of discharged patients access to view, download, and transmit their information, but only about 10 percent of those with access used it… Overall, our findings suggest that policy efforts have failed to engage a large proportion of patients in the electronic use of their data…”
What is an EHR?
What is an electronic health record? According to the government, an EHR:
“is a digital version of a patient’s paper chart.”
Hospitals, clinics and doctors’ offices were encouraged to move to electronic formats. They were rewarded financially if they did so in a timely fashion.
The idea was to make information available instantly to patients and all the health professionals involved in their treatment. People were supposed to be able to see lab results, medical history, diagnoses, treatment plans, allergies and a record of all medications. Better informed patients were expected to become more engaged in their health. Of course the ultimate goal of electronic health records was improved health.
The Bean Counters Love EHRs
How well are electronic medical records working? One thing the EHR does really well is keep track of billing. Patients can see how much they owe and pay online when they access their medical record.
The EHR is often not as good at providing patients information about their diagnoses, treatment plans and something called “clinic notes”–the actual electronic health record that clinicians utilize.
Why Don’t Doctors Embrace OpenNotes?
There are a few exceptions. Some healthcare systems have adopted “OpenNotes,” which does permit patients to see what the healthcare providers are thinking. This transparency enhances communication.
In 2017, the people who came up with OpenNotes wrote that their use improves patient-doctor relationships (NEJM Catalyst, Oct. 12, 2017). The authors describe their OpenNotes system this way:
“The Power of the Written Word”:
“Every day, clinicians and patients have important conversations about health issues, but patients often forget what was said in the charged atmosphere of the office encounter. Among the patients in the OpenNotes trial who reviewed their notes, roughly 75% reported better recall of care plans, better self-care, a clearer understanding of their conditions, and feeling more in control of their health care.”
There is another key factor about providing patients access to the doctor’s clinic notes. The authors of the study report:
“Research shows that patients and their families can identify errors, including those not apparent to clinicians. In the OpenNotes trial, about one in three patients who reported contacting the doctor’s office did so to note a possible mistake.”
Expanding Electronic Health Records:
What do patients think about patient portals and OpenNotes? Our readers have offered their opinions.
“I look on my patient portal after every visit. It would be nice to see all notes.”
Mark also uses his patient portal:
“I keep up with mine, especially since I went on a plant-based diet. All of my blood work and health markers have improved.”
“I would love the OpenNotes system. Getting access to all of my surgical, nursing and clinic notes has been nearly impossible at a local hospital where I had two surgeries recently.”
Renee accesses her electronic health records but is disappointed that there isn’t much useful information:
“I always use the patient portal. None of the doctors allow the actual patient record – just ‘visit summaries.’ These are usually just a list of current meds and vital signs at the visit.
“The hospital will provide the full patient records for download but only upon special request to the medical records office and a different viewing process. It would be much simpler to just have full access automatically. More people would use it”
Not everyone is enthusiastic. Richard wrote:
“Waste of time for me. The available info is redundant and useless. Nothing of value at all.”
“I have and do read my records. Not only do I check what the doctor says, but I have also looked at my insurance and Medicare records. Truthfully, I feel helpless! I found so many mistakes. For example, in my insurance record, I found a dialysis treatment, which both Medicare and my insurance company reimbursed. I do not have kidney disease and have never had dialysis. I called Medicare twice and my insurance company three times to correct it. It is still showing in my record. Records are good only if they are correct!”
Mistakes in the Electronic Health Records:
Georgina corrected a mistake but it didn’t show up on the patient portal:
“I always check my father-in-law’s health record after he has a visit with a doctor. I help him with his medications, finances and records. I message his doctor with questions. (I am on his approved contact list.)
“Recently after a fall and surgery for a broken femur, I was checking his visit notes because I couldn’t be with him during his appointment. The clinic notes referenced the wrong femur that had been broken. He fractured the other femur last year, and the current notes copied those from a year ago.
“I messaged the doctor and requested a change. I then called when I noticed the changes had not been made after receiving an email stating they had. I was told that the corrections may not show on the portal but were corrected in the clinic notes.”
Carole was dismayed to discover so many errors:
“After a recent hospital stay, I decided to look at my records due to several medication mix-ups at the hospital. I was shocked to see how many errors were in my record. I spent a lot of time going thru everything and writing down things that needed to be changed or updated and then went to the site to correct things.
“I spent a long time trying to find a way to make the corrections, and there was no way to make changes. It was access-only. I will not bother to waste my time checking for errors in the future.”
Audrey shared similar frustration about her electronic health record:
“It’s not “My Chart,” it is “Your Chart.” I have no ability to correct information or change any errors. In theory, I can delete read messages. I delete them, and the next time I log in, they’re all back. In theory, I can correct the medication list, deleting medications I no longer use, and adding new ones. I have done this several times. The next time I log in, the changes are gone.
“Forget about changing incorrect clinician notes. I don’t know who this chart describes, but it is not me. It is a form of CYA for the medical profession.”
People’s Pharmacy Perspective:
We are great believers in access to health information. Patients have every right to see their clinic notes. Doctors make a surprising number of mistakes when it comes to diagnosis. If that seems hard to believe, please take a few minutes to listen to our interview with David Newman-Toker, MD, PhD. He is Director of the Johns Hopkins Armstrong Institute Center for Diagnostic Excellence. You will learn why you absolutely must take an active role in your health care.
The only way a patient can know what the doctor is thinking is to see what the doctor has written in the electronic health record. That way if there are errors the patient can try to correct them. Here is what OpenNotes says about its system:
“Promote patient safety. Patients may notice errors in their notes. Correcting them helps make the record more accurate and can improve patient safety.”
Now that many patients have access to their electronic health records, it is time to take advantage of that access. Find out what is in your record, and then push for changes so that your information is both accurate and accessible. If your doctor, clinic or hospital does not offer OpenNotes or clinic notes, contact the people who manage the electronic health record and tell them that they are behind the curve. And if your health professional is not entering your clinic notes in the system, encourage her to do so.
Share your own thoughts about OpenNotes and electronic health records in the comment section below.