MITRE CORPORATION
Driving a national health data standard
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Role
UX designer
Team
20+ person team of 1 designer, creative director, 1 SME, 1 project lead, 12+ ENG
Duration
2016 (7 months)
GOAL
I produced designs and prototypes exploring the future vision and use of the Standard Health Record (SHR). This drove development of the SHR, as well as enabled dissemination and buy-in of the SHR at the local and state level through multiple hospital partnerships.
COMPLEXITY
Storyboards, UI designs, information visualizations, and mobile prototypes to communicate the use of the Standard Health Record (SHR).
IMPACT
design provided communication of the SHR at several key health informatics conferences such as HIMSS and Mass Bioinnovation. Designs were presented to governor Baker of Massachusetts in 2017 to gain SHR buy-in at the state level. In 2018, SHR was accepted into the international FHIR standard as a new oncology FHIR profile.
BACKGROUND
The US does not have a health data standard. That costs the US $80 billion a year (in 2016) because of difficulties around using and sharing health data.
MITRE corporation was developing the Standard Health Record to solve this problem. A health data language that could be used across all medicare/medicaid (4,000+) hospitals in the US.
PROBLEM
However, it was clear that the SHR model which was primarily living in code, was difficult to communicate to those outside the core development team. Clear communication of the applications of SHR was needed in order to continue to gain funding and buy-in for the project.
GOAL
Communicate the value of the Standard Health Record (SHR) by developing research-driven design artifacts that address the current pain points caused by the lack of health data interoperability.
DESIGN
A visual language for the SHR was created and applied to real-world health scenarios to show its value.
I conducted several rounds of sketching and design validation cycles with a team of 20 engineers and clinicians at MITRE. A treemap representation continued to emerge as a reflection of the SHR that many users within and external to the team felt high engagement towards.
Health information could be organized into smaller elements, such as medication dose amount being a subelement of a component of medication dosage, which in turn is a component of medications.
Applying the visual language to real-world use-cases allowed the engineering team to understand how the SHR could be used in a variety of health situations. Colors represent health information categories such as environment, genetics, behavior, and each square represents a specific health record data element. Grouped within a larger 10 by 10 grid, each particular combination of colors represents a use-case or clinical scenario.
Filled squares represent captured health data, allowing patient record completeness to be shown as part of a continuous spectrum.
One use-case was the flow of data for an outpatient journey. This allowed providers to relate to the clinical connections of the SHR. Designs were validated by several primary care physicians and system engineers at MITRE.
DESIGN
It was important to show the future services that would live on top of the SHR. I created storyboards for different scenarios of care, which were presented to Governor Baker of Massachusetts in 2016, gaining support at the state level.
Initiating a personal health record that values patient data ownership.
Continuous at-home primary care service via a patient performing a self-assessment using conversational UI.
A remote emergency care setting.
IMPACT
National adoption standards
In 2018, the SHR was voted into the international FHIR standard as a new oncology profile. The vision communicated through the designs succeeded in helping drive the value of every US patient’s data by pushing national adoption and implementation.
Gained 2+ major hospital partnerships
Designs were shown at both the local and state level, gaining partnerships with Dana Farber Institute, Brigham Womens Hospital, among many others.
Gained buy-in from governor of MA
Designs were presented to governor Baker of Massachusetts in 2016, gaining SHR buy-in at the state level.
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