In the spring of 1971, a young doctor walked into Emory University to give a Grand Rounds speech in a room full of experienced clinicians. He prefaced his speech with a warning: “It’s good for me to be here. I don’t know that when I’m done you’ll think it was good that I was here. I tend to be a hit-and-run driver.”
Dr. Larry Weed was both a physician and a researcher. He had practiced chest medicine and clinical pathology in two states. He had also worked in a research lab at Duke, UPENN, and Walter Reed.
He understood both worlds - the researcher who could study one hypothesis for months or years, and the physician who might see 20 patients in a day, making rapid decisions with limited data. He believed that the data gap in clinical care was hurting patients. He picked up a patient’s medical chart and started leafing through it.
The first sheet had "Oakland Avenue" written on it, then a page with phenobarbital use that included a note: "probable addiction." Then a scribble, then a blue sheet. As he leafed through the chart, he became more confused. A report noted the patient had received brain scans that looked normal.
Prescriptions were listed that didn’t match the noted problems. Which medication was for which problem? An X-ray of the left hip and pelvis had been ordered, and a urinary tract infection was listed. More X-rays were performed for the left shoulder and left hand. Another diagnosis of lung disease was listed alongside a personality disorder. Tests were run that he couldn’t match up with the diagnosis. What problem was trying to be solved? Was good care being given? He didn’t know.
The chart wasn’t telling a coherent story or even the whole story. It was a stack of disconnected observations, tests, and impressions without a way to know whether the patient’s actual problems had been identified, addressed, or even understood.
He famously told the doctors, “The practice of medicine is the way you handle data and think with it. The way you handle it determines the way you think.” Having all the data was critical to identifying and solving each patient’s problems.
Dr. Weed’s SOAP note method transformed medical records
After his memorable speech, Dr. Weed spent his career trying to fix this problem. He famously created the SOAP note - Subjective, Objective, Assessment, Plan - the structure many physicians still use today.
He created the Problem-Oriented Medical Record, an approach that organized charts around a patient's problems rather than around disconnected visits. He believed that if we structured medical records properly, we could actually audit care and tell whether it was good.
He believed that if the patient were involved in providing data as a shared partner, they could add what they knew about their conditions, family histories, side effects, and outcomes to complete the record. Dr. Weed said futuristically, “Patients are the largest untapped resource in healthcare today.”
Many of the problems with medical records that Dr. Weed identified in 1971 are still problems today
His SOAP notes became widely adopted, but his more radical idea that patients should own and add to their medical records with what they knew fell by the wayside in the late 1970s and early 1980’s with the implementation of electronic health records (EHR). These systems tended to solve hospital administration problems, not care quality and cure problems.
HIPAA further complicated data access by turning an insurance “portability” goal into a complete data lockdown, siloing your data inside each treatment center where you are seen to protect hospital liability around patient privacy.
Fifty years later, we're still living in the world Larry Weed described from that Grand Rounds podium. Cancer patients now have over 10+ different hospital portals, all with different passwords and none that talk to one another. Today, 70% of medical records are still faxed between facilities. Basic things like family histories or blood type are not stored in the electronic health record. Critical data like genetic sequencing can’t be added to a hospital’s electronic health record because there isn’t a place to store it.
A HealthTree Personal Health Record tells your health story, all in one place
Today is the first day of Blood Cancer Awareness Month. Over the next four weeks, HealthTree will publish a series of articles that walk through the shift Larry Weed envisioned, and how it's finally becoming possible with a HealthTree Personal Health Record.
We'll explain how you can own your story by gathering the information you need and storing it as a single source of truth in one place.
We’ll demonstrate how this Personal Health Record unlocks personalized cancer support - the ability to find customized treatment options, clinical trials, education, financial support, and coaching - all matched to your specific situation.
We’ll share how your Personal Health Record can power a cure and the next generation of cancer research, allowing vetted researchers to use the anonymized data to answer thousands of unanswered questions.
Dr. Larry Weed died in 2017 without ever seeing his vision fully realized. But the tools he argued for - patient-owned records, patient-partnered research, patients as the largest untapped resource in medicine - finally exist.
Bring your cancer health story together
This Blood Cancer Awareness month, create your Personal Health Record to own your story, personalize your support, and power the cure.
