When medical records can’t be shared, we all lose
You only have to look as far as your smartphone to appreciate how electronic information, and the ability to share it, has improved nearly every aspect of our modern lives. What used to take hours or days can now be done in seconds through a few taps on our phones—from communicating with friends and family to accessing real-time weather forecasts and traffic, to shopping online. Unfortunately, health care has not kept pace with this progress because many electronic health record (EHR) systems cannot “speak” to each other.
When EHRs can share information – called interoperability – doctors can more effectively diagnose patients and reduce medical errors, doctors and patients communicate more easily and effectively, and care becomes more coordinated and efficient.
Today, more than 80 percent of all doctors use EHRs, but different healthcare providers and hospitals use different software platforms that cannot communicate with each other. In fact, not even all EHR systems built on the same platform are interoperable, because these systems are so highly customized.
So even within a single healthcare facility, physicians, laboratories and radiology departments might not be using health records systems that can talk to each other.
This is especially critical to patients with life-threatening conditions such as cancer, whose complex treatment plans often need to change with rapidly emerging new information or changes in the patient’s health status. It's not unheard-of for a cancer patient to have to take a printout of his medical records and carry it from his oncologist's office to the hospital across the street so they can be scanned into another EHR system.
Imagine the hassle of calling a ride-sharing service and only being able to communicate with drivers who use the same phone carrier as you. But the consequences of treatment delays or mistakes can be far more serious and costly than having to wait a little longer for a ride.
A 2016 survey of cancer patient advocates by the American Society of Clinical Oncology found that 80 percent of respondents described their experience with EHR data-sharing as “difficult” or “very difficult.” They also shared how poor data-sharing affected patient care.
A cancer patient went to a hospital’s oncology department, where the staff could not see the appointment or lab information entered by the hospital’s radiation department. It was a Friday afternoon and the patient simply needed pain medication. But the records problem made getting the medicine unnecessarily difficult and stressful.
An 80-year-old woman with cancer had to travel to her local hospital to retrieve medical records to send to another provider. She then had to buy and set up a fax machine so that she could provide critical health information to her doctor.
Congress has taken steps to address this issue. The 21st Century Cures Act, passed by Congress and signed into law by President Obama in December, included provisions intended to promote EHR interoperability. In addition, the Department of Health and Human Services’ Office of the National Coordinator for Health Information Technology has outlined a roadmap for all EHR systems to be able to fully share information by 2024. ASCO and many other organizations also work on transcending these problems, for example through ASCO’s CancerLinQ® big data initiative that is collecting information from multiple EHR platforms into a standardized data format.
Patients need to be aware of this communication issue because it directly affects their care. We encourage patients to ask their doctors about the type of EHR system they use, and whether you are able to access your health information through a patient portal. Ask about the challenges your physicians face in sharing records with hospitals and specialists.
If you are not satisfied, make your concerns known to your physician and others charged with ensuring that EHR information can be safely and securely shared. And keep hard copies of key medical reports just in case! Technology has presented us with an unprecedented opportunity to improve patient care. If we squander it because our EHR systems can’t communicate with each other, everyone loses.
Dr. Richard Schilsky is a medical oncologist and the Chief Medical Officer of the American Society of Clinical Oncology. For oncologist-approved information for people living with cancer and their families, see www.cancer.net.