Clear the Hurdles, and Next Steps
There is a great story about how well medical record transparency can work, summarized in a New York Times article a few months ago.1 The story tells of 26-year-old Steven Keating, who had a “slight abnormality” on a brain CT that was done in 2007 as part of a study he had volunteered for.2 Although reassured by a “normal” follow-up scan in 2010, Keating was inquisitive, wanting to understand everything about his condition, and read voraciously about what his initial brain scan could mean. He knew the initial abnormality was near his olfactory nerve, so in 2014, when he started intermittently smelling vinegar, he suspected it might be related to the abnormality noted in his initial scan.
He sought immediate care and follow-up imaging, which showed a very large mass. Within weeks, this large astrocytoma was successfully removed; surgery was followed by chemotherapy and radiation.
Over the course of Keating’s care, he amassed more than 70 gigabytes of medical information about himself, including 10 hours of video footage from his initial surgery. Throughout the course of his illness, he remained eager to obtain all facets of his medical information, including such videos and scans, and considered these pieces of information critical to his healing process. He found that, in general, when he asked doctors to share information, he was usually granted access to what he wanted and needed, but the onus was always on him to ask. At one point he asked, “How come there isn’t a ‘share’ button at the hospital?”
Steven now has an entire website dedicated to his personal healthcare story, coupled with a passionate plea to enhance open access to medical records.2 He writes: “I have become passionate about open-sourcing the data and how we can learn through sharing. … Patients can collect their own data and they should be able to share it, amongst patients, communities, and to benefit science if desired. Healthcare should be a two-way road, patients alongside doctors and researchers as a team. The future will be driven by networked healthcare, support communities, and, I believe, patient curiosity.”
Steven was able to cobble together his medical record better than most others could, as he definitely has some advantages over many other patients; he is young, articulate, bright, and highly educated. It would be much more difficult for an older, less well educated, or disenfranchised patient to accomplish this level of understanding of and engagement in the current system. “The person with the least access to data in the system is the patient,” he writes on his website. “You can get it, but the burden is always on the patient. And it is scattered across many different silos of patient data.”
Providers and patients alike should insist on more transparency, coupled with better and more streamlined communication. As patients become more agile at maneuvering through the web portals and more engaged in their care, patients and providers gain innumerable advantages. Patients could help to find any and all medical record information that is incorrect or inconsistent, working to ensure the accuracy of the content—and get rid of “chart lore.” They could fill in missing content and update information between visits, such as changes to their social history or demographics. This is all very good timing, given the recent shift to pay for performance and population health; as financial incentives are veering away from fee for service, it is becoming more profitable to help patients stay well than to keep them sick.
As hospitalists, we should look forward to these advances in technology to enhance access to information for ourselves and for our patients. We should seek out mechanisms within our organization to enhance the speed at which open access for patients is granted, to improve patient engagement throughout the spectrum of their care.