An exchange between former Vice-President Joe Biden and EPIC CEO Judy Faulkner at a Biden Cancer Initiative event has again elevated the discussion of patient access to their medical records.
You can read the discussion on Politico. However, Biden’s main point was that patients needn’t justify their claim to their own EHR records.
In fairness to Ms. Faulkner, they did express a common view: medical records are too complex for patients to understand and access will only add confusion.
This position is a primary obstacle to progress within health care.
A closer look at the problem
EHR providers hold a powerful position. Most EHR implementations cost hundreds of millions of dollars. Some, billions.
Health systems are still writing off these investments, so any negotiating leverage on behalf of patients is muted by the reality that they aren’t going anywhere.
In fact, EHR providers appear to be solidifying their competitive position, which creates problems for the patient.
The EHR is the source of truth for most of the medical record. It is at the epicenter of the medical workflow, and it is the largest single store of discrete medical data.
Discrete data is powerful because it can be acted upon programmatically. If one had access to all of your blood pressure readings, for instance, they could write a program comparing them and easily calling out anomalies.
The EHR has this discrete data, and the vendors act as the gatekeeper, determining who gets access.
There are three practices which don’t serve the patient in this scenario, though.
- EHR vendors limit what data gets shared.
- They create barriers to data-sharing through fees.
- They limit the use of shared data to non-competitive initiatives.
The patient’s options
There are many mechanisms for sharing pieces of the medical record, but few are available to patients. Utilizing ADT, HL7, CCD, and even custom interfaces are the purview of the health care IT department.
So, how can I, the patient, share my data in a cancer study, on mobile technologies that monitor my health, or with developers looking to make advancements of interest to me?
Health care usually responds with a piecemeal solution, allowing you to download data or share it through an established portal with specific providers. These options are incomplete because they don’t allow for the next-use case. With each new idea, gatekeeper requests must be made.
Vendors will quickly point out that sharing is fine within the same EHR platform. This creates an efficiency incentive for systems, encouraging all community providers to be on the same platform. This also benefits the EHR provider by encouraging others to switch to their platform.
Now, I have read innumerable EHR vendor contracts. The language is often ominous toward providers wanting to share data from the EHR, some stating that data can only be shared in a way that won’t compete with the vendor.
Sometimes, this provision extends to future products that the vendor hasn’t even conceived. In addition, warnings of voiding support agreements are all too common.
This is patient data input by the clinical community. Yet the contract protects the interests of the vendor storing it over those it could help most?
Sure, EHR providers do allow for the sharing of patient data. They’ll tout the HIE, direct messaging and FHIR, a promising government standard for sharing discrete data elements.
However, HIEs offer limited value because they don’t exchange discreet data elements. Think of them as big storage facilities for health-related PDFs. Doctors only see a list of files that they can click to view the contents. It’s as frustrating as you’d imagine.
FHIR is exciting, but still in early development and only exposes a small subset of health care information.
Instead, here are three things EHR providers could do on behalf of the patient.
1. Open data models.
Patient data isn’t a competitive advantage.
Yes, the data model of the EHR is your protected intellectual property. But it’s bad business to hold onto it so tightly.
On one hand, you have the opportunity to enable a health care experience renaissance in our time. The alternative? Eventually, forces will compel you to open your model for the good of the people or social backlash will negatively impact your brand.
Choose to be the hero.
How can you do this without exposing the company to competitive pressure on the core product? 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, and Apervita, among others. By utilizing these, you’d limit the exposure of your data model, yet still open up opportunities like Biden’s Cancer Initiative.
2. Embrace community innovation
You can’t out-innovate the market.
Imagine an Apple-designed patient interface alongside an Amazon-engineered logistics engine coupled with a Google-powered analytics framework. I don’t really want these companies accessing my health data, but patients should have the option to share data with them if they can provide meaningful value.
A move by any one of these vendors could create a serious competitive advantage. If I were on an EHR provider’s board, I’d encourage them to seize the first-mover advantage.
3. Change health care culture
Embrace your position in the health care ecosystem.
You have a leading voice in the community. Changes you make impact millions across the globe. If you embrace a secure, open data-sharing model, health care will follow.
This requires a cultural overhaul. Look at your contracts; remove language discouraging innovation and experimentation. Train staff on the value of open models. Encourage early adopters and create a community that embraces advancements other than yours.
Imagine the possibilities if an entire community’s creative energy were unleashed on the current health care challenges.
You hold the cards, EHR providers. We need you to make the first move.
Bill Russell is CEO, Health Lyrics. He can be reached on Twitter @thePatientsCIO.
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