Medicine has been plagued by a culture of paternalism since . . . while, since forever. It’s still around, of course, but we’ve come a long way in the last few decades. I cringe when I watch movies from the 1940s and 1950s portraying a physician sharing private medical information with a woman’s husband because she couldn’t be trusted to understand complicated health information. Or maybe because she would react “hysterically” to a poor prognosis. While those sexist stereotypes are hopefully on their way out, I still see some physicians continue in less obvious, but still paternalistic, ways.
In the recent past, physicians were the keeper of the medical record. It may have been about you as the patient, but we owned the paper. Today, when people ask me who “owns” the medical record, I reply, “Yes!” While that might not be a logical answer, I’m trying to convey the fact that there are many owners of the record. Naturally, the information in the record is about the patient, and he/she should own those data points. Yet the law requires physicians and hospitals to maintain charts for many years and to ensure that the medical record accurately represents the patient. Lab companies must preserve lab results, yet those are part of the record. Same for diagnostic reports from radiologists and pathologists. Hence, I ponder again, “Who owns the chart?” Say it with me: “Yes!”
What does a culture of paternalism have to do with ownership of the medical record? Everything. When I was a resident (back in the 1820s), I sometimes had to go down to the medical records office to review a chart with a patient’s family. Believe it or not, the patient and his family weren’t allowed to read through the chart without a clinician there to explain what everything meant. It’s true that on paper (it was the 1820s after all) there was a lot of scribbling, abbreviations, and doctor-speak. For the novice, it would be overwhelming. But for a patient with a serious chronic condition, the chart held the keys to the kingdom. After being around doctors and nurses for weeks at a time, some patients and their families learned the lingo. Neutropenia was bad; an elevated ejection fraction was good. I promise you that the parents of kids with cancer could absolutely hold their own with pediatric oncologists; it seemed to those parents like their child’s life depended on it.
Clinicians have slowly been ceding health information to our patients. It started with lab results being made available via online patient portals. Many doctors thought most patients would be concerned by innocuous results that may have been “out of range” but likely had no clinical significance. We braced for a tidal wave of phone calls and online messages, but for the most part, the wave never came. Now that virtually everyone has access to most of their lab results online, there has been a push to share physicians’ progress notes via the patient portal.
The call to share progress notes owes much of its success to the OpenNotes organization. This group came together to help medical systems share their progress notes. OpenNotes isn’t a software or technology company, or even a consulting group. They are a non-profit that shares success stories, how-to’s, and research about what happens when patients can read what is written about them. I’ve had the pleasure of being on several webinars that the OpenNotes folks have led regarding implementing the sharing of progress notes in California.
Peter Drucker, the famous management consultant, once noted that “culture eats strategy for breakfast.” He’s not saying that strategy isn’t important, just that a group’s culture can easily overwhelm the best planned strategy. The OpenNotes group knows this, and their strategy seems to be designed to help change the paternalistic culture that still exists to some extent in certain doctor groups and hospitals. A recent call featured topics such as “Nervous Clinicians: Why Is Culture Change So Hard?” and “Cultural Myth Busters: OpenNotes at [a County Health Department].” I think it’s great that this group knows the technology is the easy part; the difficult work involves changing the culture!
Sharing patient data with the patients themselves requires a culture change. Much about healthcare IT and electronic health records (EHRs) necessitates the same cultural shift. It wasn’t easy to get doctors to enter their orders electronically, but virtually every hospital now requires it. It can happen. It just takes a lot of work, and a whole lot of understanding about culture!
Have you moved the dial on your group’s culture? If so, how?