Medical record exchange is a major topic in healthcare, needed to improve healthcare outcomes (and reduce costs) for multiple patients receiving care at multiple sites. The discussion in the industry primarily focuses on technical challenges. In reality, many of the technical challenges have been addressed. A big factor in the inability of medical record exchange is the hospitals themselves. They block information and APIs. I’ve had two experiences with getting medical records.
Last year a family member was hospitalized at St. Joseph Hospital, which is part of the Emory Healthcare system in Atlanta. Because there were problems putting together the prior medical records from another hospital across the street (they never got them), I set up a Microsoft HealthVault account for any future issues. HealthVault can import the XML Continuity of Care Document (CCD). While the CCD is a summary (use your browser to reveal the source on this example to get an idea of the XML structure that’s involved), it contains important information about the patient such as medications, conditions, and laboratory tests.
St. Joseph has a Cerner Electronic Medical Record system and the Cerner patient Portal. In the patient portal you can also send secure Direct messages. When I logged into the Emory system I could not find the CCD anywhere. The hospital told me to call Cerner support. Turns out the Cerner patient portal does support the CCD. Emory had disabled the feature.
I resorted to sending a lot of PDF files using the Direct messaging feature in order to get them into HealthVault. Since a PDF is basically electronic paper, I have to manually search for any information I needed. Last month Emory disabled sending Direct messaging to anyone outside of their system. Now I download the PDF onto my computer and then upload it to HealthVault. It’s just more friction where there shouldn’t be any.
Two weeks ago I had a different experience in Chicago, working with Northwestern Medicine, Rush University Medical Center, and Presence Health patient portals. I needed to consolidate one patient’s CCD with multiple providers. All of the systems ran Epic’s Electronic Medical Record system. The good news: I was able to access and download all of the CCDs within an hour. The bad news: the medication portion was different on all three systems and even the provider who wrote the prescription information was wrong. Lab tests were missing. While all three systems were running Epic, none of them communicated with each other. The healthcare providers sent faxes to each other and uploaded them into their Epic system and talked on the phone because none of them activated Direct messaging between the different healthcare systems.
A survey of 60 Healthcare Information Exchange leaders was done by the University of Michigan Schools of Information and Public Health in March 2017 on information blocking. 22% responded that hospitals/health systems routinely or often control patient flow by selectively sharing patient information and 42% reported that vendors routinely or often make third-party access to standardized data difficult.
Why would hospitals/health systems do this? It’s a combination of multiple factors. Revenue is a factor. The reason that patient portals are available is driven by reimbursement dollars from the federal government for meaningful use compliance. By complying, the hospitals/health systems receive money. Across the four portals I used, some of them did just the bare minimum to qualify, while others embraced it.
Secondly, training is an issue. One of the portals was missing lab results. When we visited the provider, she pulled up all the information on her computer and realized she forgot to release that information to the patient portal. It took her a day to figure it out, but she got it done.
Finally, there is an attitude problem. Institutions and vendors believe they know what is best for the patient and that limits their vision on what patient enabled data could do. Last month Politico reported on an exchange between Joe Biden and Epic CEO Judy Faulkner. “Why do you want your medical records? They’re a thousand pages of which you understand 10,” recalled Greg Simon, who worked on the moonshot and is now president of the Biden Cancer Initiative.
Biden responded, “None of your business,” according to Simon, who detailed the conversation during a MedCity conference in Philadelphia. “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,” the former VP said.
Although Cerner, Epic, and other vendors support APIs based on the FHIR data standard, it is up to the hospitals/health systems to make them available and interoperable. Imagine the innovation that would occur if you could easily receive information from all your providers.
Not everyone holds information hostage. Utah UHIN operates a Clinical Health Information Exchange, allowing doctors and patients to work together for safer, better-coordinated care by making crucial information available to doctors at the point of care. While they have wide adoption in the state, UHIN constantly is adding health systems, home health and skilled nursing facilities. They also connect with multiple states like Nebraska, Nevada, and Idaho. UHIN is building a pilot for a unified patient portal so that patients can access their own medical records across all providers.
Medal demonstrates what the future can be with API access. Medal aggregates and normalizes data from multiple formats, including CCD, as FHIR resources. They provide “Google style” indexing and search on records from any source. Medal sees this as the first step in developing a "browser" for healthcare which enables the ability to innovate multiple breakthroughs in patient care and population health management.
As I have experienced first hand, the journey through the healthcare system is confounding to the patients and their advocates. In order to realize this future of better healthcare, we must solve the issues of medical information exchange. Creating the APIs needed and motivating hospitals/health systems and vendors to stop blocking the information and APIs is a start, but not sufficient. The patient journey needs to be prioritized in healthcare delivery and everything from administration goals, to the provider goals, needs to be measured against this journey. Until this happens, conflicting priorities and the use of antiquated fax machines (even between providers using the same vendor's systems) will stand in the way of improved healthcare.