Former Vice President Joe Biden elevated the discussion around patient access to their medical record once again with the revelation of an exchange between him and EPIC CEO Judy Faulkner at an event in support of the Biden Cancer Initiative. I won’t rehash the discussion, you can read about it on Politico. Biden’s main point in the discussion is that patients needn’t justify their claim to their own EHR records. In fairness to Ms. Faulkner and EPIC, they expressed a common view within the EHR community that the medical record is too complex for the patient to understand and access will only create confusion. This position is a primary obstacle to progress within healthcare.
A closer look at the problem
EHR providers hold a powerful position. Most EHR implementations are in the hundreds of millions of dollars and some in the billions. Health Systems are still writing off these investments so their leverage in any negotiation on behalf of patients, with the EHR provider, is muted by the reality that they aren’t going anywhere.
EHR providers appear to be solidifying their competitive position with patient data. This is a pretty provocative statement so allow me to elaborate. This will get slightly technical before we come back and explore the three ways this creates a problem for the patient. The EHR is the source of truth for most of the medical record. The EHR is at the epicenter of the medical workflow and it is the largest single store of discreet medical data. Discrete data is when a field stores a finite set of values. Your blood pressure at your last visit is an example of a discrete data element. Discrete data is powerful because it can be acted upon programmatically. If a programmer has access on your behalf to all your blood pressure readings she could write a program that compares these elements and calls out anomalies with a simple alert. The EHR has discrete data and the vendors act as a gate keeper to determine who gets access.
Three practices which do not serve the patient in this gatekeeper scenario are:
- The EHR vendors limit what data gets shared and in what format
- They create barriers to data sharing through fees
- They limit the use of shared data to non-competitive initiatives & contract/warranty violations
There are many mechanisms for sharing pieces of the medical record. Very few of these mechanisms are available to the patient. Utilizing ADT, HL7, CCD, and even custom fields are the purview of the healthcare IT department. How can I, the patient, choose to share my data in a cancer study, with a mobile technology that can monitor my health, or with a group of developers looking to make advancements in something that interests me? Healthcare usually responds to this with a piecemeal solution of allows you to download your data, or share your data through a portal with a specific provider. These options are incomplete because they don’t allow for the next use case. Each time a new idea arises a request has to be made to the gatekeeper.
Many providers will pay as much as $30,000 to setup a connection between the hospital and the specialists. If you’ve ever wondered why you have to answer the same questions when you go from the hospital to a specialist it’s because the data sharing is complex, expensive and limited. The EHR vendors and some providers will quickly point out that the sharing is fine between the same EHR platform. This creates an efficiency and economic incentive for systems to encourage all the providers in the community to be on the same EHR platform. This also benefits the EHR provider by encouraging more providers to switch to their platform. This is never spoken about but an obvious conclusion.
I have had the opportunity to read far too many of the EHR vendor contracts. The language in many of these contracts is ominous to providers that want to share data from the EHR. Some go as far as to state that data can only be shared in such a way that won’t compete with the EHR vendor. In some cases, this provision extends to future products that the EHR vendor hasn’t even conceived yet. Front line staff from the EHR provider will warn systems that they may void the support agreement if they get too creative with the data and step out of line in any way. A situation you want to avoid for such a critical system. Remember, this is the patient data input by the clinical community, and yet the contract somehow protects the interest of the vendor that stores it over the interest of those it could help the most.
Make no mistake EHR providers do allow for the sharing of patient data. They will tout the Health Information Exchange (HIE) Direct messaging, and FHIR, a promising new standard for sharing discreet data elements being advanced by the government. Most HIEs offer limited value because they don’t exchange discreet data elements. Think of it as a big storage facility for PDF files about your health. The doctor sees a list of 50 files that they have to click on to see what is in each one. It is as challenging for the doctor as you think it is. FHIR is exciting but early in its development cycle and only exposes a small subset of healthcare information. EHR’s may also tout their APIs which leave them in control where they can continue to offer a limited data set and functionality.
I would like to suggest three things all EHR providers might do on behalf of the patient.
Open your Data Model
Don’t use patient data as a competitive advantage. The data model of the EHR is your intellectual property and protected as such. But it’s just bad business to hold onto it so tightly. The positive way of saying this is that you have an opportunity to enable a care experience renaissance in our time. The negative way of saying this is that eventually, forces will either compel you to open your data model for the good of the people or the social backlash will be bad for your brand. You can choose to be the hero of this story.
A way of doing this that doesn’t expose the company to competitive pressure on the core product is to select a group of vendors that can provide a standard set of APIs to the industry. Candidates for this include SMART, MphRx, Hart, HumanAPI, Redox, Apervita, amongst others. By utilizing these companies you would only expose your data model to a limited group of vendors and still open up opportunities for moonshots like Biden’s Cancer Initiative.
Embrace the Innovation and Entrepreneurial Community
You can’t out innovate the market. Imagine a patient interface designed by Apple on top of a logistics engine engineered by Amazon coupled with an analytics framework powered by Google. I don’t really want these companies to have my health data, but I want to give patients the option to share their data with these companies if they can provide meaningful value, and I believe they can. The innovation that could be unleashed is staggering. It’s not just large companies, Rock Health estimates that $4.5B annually is being poured into new healthcare ventures. The obstacle that each face is access to discrete patient data. A move by any one of the vendors in this area could create a serious competitive advantage. If I were on the EHR providers board I would encourage them to seize the first mover advantage.
Change the Culture of Healthcare
Embrace your position in the healthcare ecosystem. You have a leading voice in the healthcare community. You speak and it gets carried in every healthcare journal. Changes you make to software impacts millions of people across the globe. The point here is that if you embrace a secure open data sharing model, healthcare will follow. This will require a cultural overhaul. Look at the language in your contracts, remove the language which discourages innovation and experimentation. Train your staff on the value and possibilities of open models. Finally, encourage the early adopters and create a community that embraces advances on an open platform.
Imagine what would be possible if the creative energy of an entire community were unleashed on the challenges that face healthcare. We are asking you, the EHR providers to consider being the hero of this story by opening up your data model, embracing the innovation community and becoming a champion within healthcare for progress beyond your four walls. You hold the cards, we need you to make the first move.
My intention in writing this is to further the discussion on data interoperability within healthcare. I have the utmost respect for the hard work and amazing software that EHR providers have created and their commitment to work with healthcare providers to further health outcomes in the communities where we live. Views expressed in this piece are the opinion of Bill Russell. You can follow me on twitter @thePatientsCIO, additional writings can be found on my blog at www.healthlyrics.com.