Seinfeld has been described as a show about nothing. So it may come as a surprise that one of its episodes tackled the issue of patient access to medical information.
In the episode Elaine goes to visit her doctor because of a rash and gets a look at her chart. She notices she’s described as “difficult” for refusing to put on a paper gown at an appointment three years before. She tries to talk to her physician about it and he pretends to erase the comment. She goes to a new physician who takes one look in the chart, does a halfhearted assessment of the rash and hurries out the door. Her only option left is to get Kramer to “steal” her chart so she can remove the offending page. Of course in typical Kramer-style, this ends in failure. He doesn’t get the chart and: “Now there’s a chart on me!”
This episode aired 18 years ago, but some of the sentiment expressed is still present in today’s world of healthcare.
Who has the right to read a patient’s chart? What sort of discussion should take place around physicians’ notes? Will patients be upset with what is written in the chart? How will physicians handle it if they are questioned by patients? Is there a culture of retribution against patients who ask questions?
Many of these questions have been addressed in The OpenNotes project. The 12-month study, which began in 2010 and involved more than 100 primary care doctors from three U.S. medical institutions, explored how sharing physicians’ notes may affect health care.
OpenNotes began with the premise that patients have the right to review their medical records, including those written during physician visits. This is a far cry from what Elaine was told when she was “caught” looking at her chart. “Elaine, you shouldn’t be looking at that,” her doctor said.
In a pre-study survey, researchers asked 170 physicians and 38,000 patients what they thought the results of reviewing and sharing doctors notes would be. Their responses were:
- Patients expected to learn more about their conditions, feel greater control and take medications more effectively.
- Doctors were cautious, held widely varying views, but a majority felt open notes were a “good idea.”
- Doctors were concerned about greater demands on their work lives, frightening patients, and compromising quality if they changed the way they wrote notes.
- How did OpenNotes affect patients?
- Did patients choose to read their notes?
- Did they have better recall after visits? Feel more in control of their care or take medications more effectively?
- Were they frightened, confused or worried by the notes?
- Did having access to their health records prevent important mistakes?
- Did sharing notes cause a major change in primary care physicians’ work lives?
- Did physicians feel disrupted by an avalanche of patient questions?
- Did they change the length or focus of visits or the way they wrote their notes?
Of the 19,000 patients who ended up taking part in the trial, 84% at Beth Israel Deaconess Medical Center, 82% at Geisinger Health System and 47% at Harborview Medical Center opened at least one note. Between 20-42% of patients shared their notes with someone else, usually family members or relatives. 77-85% of patients reported better understanding of their health and medical conditions, 77-87% felt more in control of their care, 70-72% said they took better care of themselves, and 60-78% reported doing better with taking medications. Very few patients (1-8%) reported being confused, worried, or offended by what they read in their doctors’ notes.
How about the Doctors?
Before the study, physicians said they were nervous OpenNotes would interrupt their workflow or interfere with their relationships with patients. Yet only 0-5% reported longer visits, 0-8% took more time addressing patients’ questions outside of visits, and 0-21% reported taking more time writing notes. Some physicians did change the way they charted with 3-36% of reporting they changed the way they wrote about mental health, substance abuse, cancer, and obesity. Many physicians said their relationships with their patients were stronger because there was enhanced trust, transparency, communication, and shared decision making.
In the end:
- 99% of patients wanted open notes to continue.
- 17-26% of doctors preferred not to continue, but when offered the chance to stop, none did.
- 85-89% of patients said availability of open notes would influence their future choices of doctors and health plans
It seems that the OpenNotes concept is spreading. In addition to the three original sites – Beth Israel Deaconess Medical Center in Boston; Geisinger Health System in Pennsylvania and Harbor View Medical in Seattle – more major health systems like Cleveland Clinic and MD Anderson Cancer Center are getting on board with sharing visit notes.
As transparency in the world of medical records expands, I’d like to see more education for patients on the when, hows and whys of discussing medical information with their physicians. What is the best way for a patient to bring up a discrepancy in a chart? What if there is something in the chart they don’t understand? How should they go about getting an explanation?
As I wrote about in my last post, I recently had a family member who had a less than stellar healthcare experience that an open notes setting would have brought to light. It also would have required bringing awareness of conflicting information in the reports to the physician who over looked something in a pathology report.
How do you feel confident enough to do that when you are not trained in health care?
Had we had the report a year before, I would have had no problem calling the physician’s office and asking what the deal was. The actual patient would likely not have. So is the solution to have nurses in your family?
I’d like to hear more opinions about how patients can feel more comfortable bringing up information to their doctors. I’m concerned a patient may not want to bother a physician with questions and they’ll turn to Google.
I know many people advocate for online personal research, but I just don’t think Google is enough—I saw this with my own family. I Googled and got the correct information, which was the same reassuring information that would be given to us at the oncologist. However, others used Google and thought the cancer had spread through the lymph nodes, which did cause unnecessary tears because, in fact, it had not.
I also want patients to feel confident enough to bring up issues. Patients will often still defer to a physician rather than bringing up the elephant in the room. Some patients don’t want to bother their already-busy doctor or they don’t want the doctor to feel like they are questioning their authority and training.
We still need to find a way around the prevailing attitude that the doctor is in charge. As OpenNotes has shown us, a partnership is the best way to run a patient-physician relationship. Next comes the specifics on how to get us there.
I’d love to hear your advice or thoughts on how to empower patients to feel comfortable using their PHI though OpenNotes to get the best care.
Jennifer Thew, RN, MSJ
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