A Day In The Life for a Patient
It was 2007. One summer day I was playing basketball and pop. I tore the ACL (Anterior Cruciate Ligament) of my right knee. It was painful. I lied on the court hating every moment my friends asked me if I was ok. This pain was the easy part. After few minutes of agony, I was able to stand up and walk home. True pain started when I sought medical help to remedy the broken part of my body.
A visit to the emergency room followed. Then, there were consecutive visits to bone specialists, joint specialists, and sports injury specialists. For each visit, there were tens of forms about my medical history, insurance, or allergies filled and signed. Each doctor office asked for their own scans and MRIs (magnetic resonance imaging), which generated additional forms and paperwork. The bad part was not only the volume of paperwork needed. It was the duplicated information given just because the provider or clinical practice was different. I could not guarantee that I provided the same answers for the same questions. Yet, each office took my answers as official records, and sealed them. No one institution knew what the other uncovered about my situation. Yet it was the same condition. A surgery was scheduled—more forms. I had the surgery and needed physical therapy after—and yes, more forms. It all came out ok. My knee started functioning normally again. But I could not get over the massacre of my medical record during this experience.
Progression of EHR Systems
Recovering in bed, I started thinking of a better way to manage medical records. I was seeking simplicity and automation. With traffic or financial records, a swipe of an ID generates a historical log of activities for one individual. A quick search showed that Electronic Medical Records (EMR) or Electronic Health Records (EHR) were already being developed. In fact, they started in the 1970s. It was that far back but could not see it in practice. I was so hyped on electronic heath records that I made it the topic of my dissertation in 2009. It was the same year the federal government passed the American Recovery and Reinvestment Act (ARRA) allotting almost $20 billion to modernize health information technology systems. The ultimate criterion was interoperability—the sharing and exchange of medical information between providers. EHR is meant to be the all-encompassing information on an individual patient. I was hopeful and excited to see the progression of simpler medical care management for the patient. But it did not come.
How so you may ask. That was 16 years ago. Today, there is almost perfect adoption of EHR systems that meet government criteria according to the Centers of Medicare and Medicaid Services (CMS). All hospitals, laboratories, clinics, pharmacies use, track, and populate medical information electronically. There are hundreds of EHR application vendors like Epic, Cerner, Meditech, and Allscripts. Most patient records are digital—easily accessible and searchable. Scheduling is made online. Check-ins are made on mobile apps. Prescription refills are systematic. Surely, billing and collection are online. Is this not the future I was dreaming about in 2007? Sadly, it is not.
What Patients Want and What They Get from EHR Systems
I am not alone. A patient survey published in February 2023 in partnership between RevSpring and Keypoint Intelligence shows that over 70% of patients are less than satisfied with completing paperwork and forms still. Patients want to see all their doctor visits, diagnosis, prescriptions, hospitalizations in one place. Patients want to see whomever they want without having to sign physical releases and wait for information to pass from one hand to another. Patients do not want to echo their insurance member ID and group ID—they are part of their records. Patients want to do a single scan or blood test and have 10 doctors across the nation review them. Patients want to know how healthy they are given their test results, age, and lifestyle. Patients want to move from one state to another (or neighborhood to another) and not worry that their medical history will start over.
As a technologist, I can say that these are not happening now and unlikely soon. There are two reasons. The first is that patients do not fully own their medical records. Each Care Delivery Organization (CDO)—physician office, hospital, laboratory, pharmacy—maintains its own medical records about patients. If these CDOs￼ belong to a single network, like a hospital group, then they share an EHR. If a patient only goes to CDOs within that network, then their medical record is likely to be intact in a single repository. But most patients cannot. They change physicians. They change pharmacies. They change insurance. They move. While all CDOs have digital records on the patient, they each have different views of the patient.
Interoperability is the sharing and exchange of medical information between different CDOs. That happens at some level. And it is important. But it is very selective and limited. If one doctor ordered an MRI for a patient, she receives the results, interprets them, shares them with the patient, takes notes on next steps, and stores them in her organization’s EHR. If the patient wants another opinion, she can ask for the MRI to be shared with the other doctor. Standards and technologies are growing that allow most types of EHRs to send and receive medical information. Thanks for that. But it is only the MRI results that are sent. The new doctor interprets them, shares his diagnostics with the patient, takes notes, and stores them in his organization’s EHR. Now the patient has two interpretations and two opinions on the same MRI in different systems. There is no synching, no consolidation, and no single view of the MRI results.
Let us look at banking and financial records for a minute. They are not perfect, but better than healthcare in providing a joint view of the customer. A customer can have a checking account at one bank, a savings account at another bank, a mortgage at a third, a credit card at a fourth, and a retirement account at a fifth. All have their own records on the customer’s financial being. But they all also partner and integrate with independent organizations that do have the customer’s all-encompassing financial history and status. They are TransUnion, Experian, and Equifax. The customer’s credit score and financial health are determined by one of those three bureaus rather than an individual bank, even if the customer banked with them for life. Healthcare does not have integrated repositories, yet.
Patient-Centricity For a Better EHR Experience
Data limitation discussed above is the first reason my view on patient needs from EHR is not happening. The second reason is the digital experience itself—how the patient interacts with that information. Current EHR systems are built for payers, not patients. Payers are governments and insurance companies who bear the medical care cost. Payers want simple billing, payments, reduction in hospitalization, and telemedicine to limit visits. These features are fully digitized and often automated. They lower administration costs, and there are benefits to that no doubt. Features and applications on bill payment, visit history, appointment scheduling, test results, office search are mostly what makes up a patient’s experience with EHR. It is the residual of what payers need from the systems. It makes a dry executional experience. Patients want more. For example, a survey published this year by Tebra shows that 55% of patients want prompt response to questions and concerns.
EHR systems and applications are not being developed with patient-centricity. Patients are the customers, and their needs should have similar weight, if not more, than payers. Loyalty to providers is something of the past. 68% of patients would switch doctors for their preferences according to the 2023 Tebra survey.
Care providers who are looking to help elevate the value of EHR for patients can do two things. The first is engage, participate, and integrate with independent bodies like Carequality—a non-profit working on a national-level, consensus-built, interoperability framework to enable exchange between and among health information networks and service platforms. There are others out there. And they are all moving the needle in the right direction. The second thing they can do is invest in patient-centric experiences and applications. Yes, they may be dependent on and tied to the EHR system they are using. But if they look beyond the off-the-shelf applications the vendors provide, they can use middleware and application programming interface (API) to build a customer layer that can appeal to patients in general and their own patients in particular.