A conversation between former Vice President Joe Biden and Epic CEO Judy Faulkner last month rekindled a long-running debate in the healthcare industry over who really owns patient records. While the methods for creating, gathering and analyzing patient records have certainly changed, the question of how much of that information patients should be able to access remains.
Some of the considerations are the same as always: Will patients understand their records and draw the correct conclusions from them? Do patients want to see everything or just a summary? What about accidental privacy violations?
Other questions have come about more recently, as providers implement and upgrade their EHRs. How is the patient data synthesized? Will a patient wary of computer viruses follow the email link to their patient portal? What about the bits of data still on paper?
Regardless, patient advocates are pushing for more and easier access to medical records, and many in the industry view providing that access as the inevitable path. The next step is figuring out the best ways to do that.
The culture issues
The exchange between Biden and Faulkner occurred during a meeting for Biden's Cancer Moonshot project and was reported by Politico. Biden spoke about the need for patients to have access to all of their medical records. Faulkner suggested that might be overkill, and said patients would benefit from a shorter summary.
When Faulkner asked why Biden would want 1,000 pages of a medical record when he would only be able to understand 10, Biden reportedly shot back, “None of your business … If I need to, I’ll find someone to explain them to me and, by the way, I will understand a lot more than you think I do.”
Some in healthcare still view patient records paternalistically. Brian Eastwood, analyst at Chilmark Research, told Healthcare Dive that some physicians and healthcare entities feel that they own the data.
“All the technology in the world won’t fix the problem if these organizations won’t release the information or understand that patients have the right to see it,” he said.
Eastwood said the biggest barrier to patient records is not technology, but the culture in healthcare that restricts this sharing of patient information. Healthcare needs to “stop treating patients like second-class citizens,” he wrote in a recent blog on the topic.
Dr. David Levin, co-founder and chief medical officer at Sansoro Health, told Healthcare Dive he agrees that culture is a bigger issue than technology. In fact, he said technology is already available outside the industry, but healthcare organizations haven’t integrated to that level because some healthcare professionals view patient data as theirs and think it gives them an advantage over competitors.
“The idea that monopolizing the data is a competitive advantage is really misguided,” said Levin.
All the technology in the world won’t fix the problem if these organizations won’t release the information or understand that patients have the right to see it.
Chillmark Research analyst
David Harlow, principal of The Harlow Group, told Healthcare Dive cultural and business issues are causing disruptions to the information exchange between healthcare and patients. Though many clinicians and healthcare leaders don’t think patients would understand their full medical record, OpenNotes should have changed that thinking, he said. The nationwide movement encouraged doctors to voluntarily share their complete notes with patients.
“The OpenNotes Project has demonstrated that when patients have the same access to their records as their clinicians do, communication improves, care improves and health status improves,” said Harlow.
One problem is that many healthcare organizations would rather have patients not seek care outside of their systems “both for continuity of care reasons and for financial reasons,” he said.
“There has therefore been less pressure than there ought to be from senior management to ensure that EHRs are truly interoperable across health system lines,” said Harlow.
What are patients owed?
Eastwood said patients deserve to have patient record access and to have medical professionals explain it to them. If they don’t get the information from medical professionals, patients will search for answers elsewhere, like the internet.
Harlow said most patients don’t want all of their medical records. However, they may want all of them if they’re faced with a serious illness. There have been cases in which patients haven’t been able to obtain records “in a sensible, integrated fashion,” which he said “can only lead to suboptimal care on the individual level.”
Levin said he views patient records like a financial trust. The healthcare entities manage and hold the records, but they really belong to the patients. If healthcare officials thought of patient records that way, they would be more likely to make wise decisions, he said.
“It’s a fundamental human right,” said Levin, who wrote a blog post on the topic.
There is also an important piece that healthcare leaders can’t forget, which is finding out what the individual patient wants. Some patients still would rather get a phone call or visit a provider’s office rather than get information through an EHR or patient portal. One patient may want the complete patient record, another person would rather have just high-level, actionable items, while still others want both. Healthcare has to provide the information and communication the way the patient wants it, said Eastwood. He said the industry has skipped over this part of the issue entirely.
“There needs to be a broader discussion about how this information is used and helps patients … but really getting down to the value to patients is the fundamental question,” he said.
However, Dr. Peter Kilbridge, senior director of research at the Advisory Board Company, told Healthcare Dive that in many states the physician or hospital owns the medical record legally. There are legal restrictions in place, such as HIPAA, and patients have the right to see their medical record. There are also many states that don’t have any specific laws about medical record ownership, which might mean an EHR vendor could own the records. New Hampshire is the only state that specifically gives patients ownership of their medical records.
The tech issues
The Biden/Faulkner discussion came on the heels of the passage of the 21st Century Cures Act, which includes provisions to provide patient records in a “single, longitudinal format that is easy to understand.” Currently, EHR vendors need to provide a summary of the record — not all of it. EHRs were originally created to capture billing information and billing codes, but have increasingly become part of care delivery.
Levin said digitizing medicine is a great first step, but healthcare is in the “age of the Model T” when it comes to patient records and EHRs. Levin said healthcare still has issues with silos and data not flowing between entities, but said patients have every right to access their medical records.
Another issue is that patient portals currently often rely on emails. Eastwood said patients get an email alerting them that there is something new on their portal, but they may ignore it because they think it’s spam, or worse. Healthcare communication can seem sketchy to the patient because it’s often unexpected and might not clearly state that it’s coming from the doctor.
Eastwood gives the example of a patient who is sent an automated email that asks them to click a button to go to the patient portal. Cybersecurity experts warn people to never click buttons in emails unless they are sure who sent them. So, the patient might ignore the email to be on the safe side.
“This practice flies in the face of cybersecurity,” said Eastwood.
Another issue with patient records is they are not 100% electronic. For instance, content forms and letters are usually on paper and may be in a binder, or on a disk or USB flash drive. “The idea that medical records are 100% paperless is still kind of a fallacy,” said Kilbridge.
Future of EHRs and patient record access
Levin said physician productivity and job satisfaction have taken a hit with EHRs, but product improvements should offer more optimal user experience and more efficiency. The next stage of EHRs will create more workflow-friendly processes for clinicians and close the gap between healthcare and other industries in terms of consumer-friendly technology.
Eastwood said healthcare is beginning to make headway in providing functionality and modules that go beyond information at the point of care and which creates an individualized care plan for patients.
He added that changes to patient record access will impact clinical staff workflow. Eastwood said notetaking will still be needed, but documents to build out longitudinal patient records with multiple sources of data well beyond EHRs themselves will provide a more well-rounded view of a patient.
Kilbridge said future EHRs will allow for more sophisticated analytics, and patients and health systems can build a high level of trust with patients.
“I think more sharing of information with patients will improve the engagement of the patient with the doctors. I think it would potentially improve loyalty to a patient or to a hospital or a system,” said Kilbridge.
Harlow said the point of EHRs is to improve individual and population health and make healthcare more efficient and effective. EHRs are a tool to improve effectiveness and efficiency, but they aren't an “end in themselves,” he said.
“If healthcare providers can’t or won’t share individual patients' EHR data, then neither of these goals may be realized. We will have spent 10s of billions for no good reason and we will continue to see healthcare costs spiral out of control,” said Harlow.