Improved patient survey engine advances rheumatology research

FORWARD—The National Databank for Rheumatic Diseases is the largest patient-reported research databank for rheumatic disorders in the United States. The organization’s mission over the last 20 years has been to advance research and discovery in rheumatology and beyond through human connection and deep insight. Studies have shown that patients who enroll in a registry live longer than those who do not. Hope is what drives them. The FORWARD project collects data on rheumatic conditions directly from people who have these problems. The goal of the project is to advance knowledge about the causes, outcomes, costs, treatments, and results of treatments related to rheumatic conditions.

The Problem

Collecting data from a registry with tens-of-thousands of patients is at the heart of FORWARD’s mission. FORWARD’s researchers use this data for the betterment of those suffering with rheumatic conditions. Surveying this population through the web is the primary source of FORWARD’s data, but the organization’s aged data gathering software was holding it back. One primary issue was the lack of configurability. It took a developer to make changes to FORWARD’s surveys. And if making survey changes was hard, then implementing a new survey was a herculean effort. Using an off-the-shelf survey tool was not an option as FORWARD’s survey is very complex. This complexity is driven by the use of question skip patterns, defaulting data from the last survey the patient completed, and the use of response types that are custom to healthcare and rheumatic diseases.

The Solution

We did a deep dive into FORWARD’s business and technology challenges. We worked to build a technology roadmap that would allow the organization to move forward at a pace where system changes would not be overwhelming, but brisk enough to have impact. This roadmap was driven by objectives, priorities, and budget. Goal number one was to implement a new survey engine to make FORWARD’s market research tools serviceable through the user interface, not code. This had to be done without impact to the downstream data processing. We built a survey tool that is now administered by the operations staff. Surveys can be cloned or created, edited, and archived without IT being involved. We did this without changing the existing data architecture and associated legacy systems.

The Outcome

FORWARD’s administrative staff has been able to conduct its bi-annual market research with a robust tool that has a modern and intuitive user interface. When COVID-19 arrived in 2020, they were able to quickly create a new survey without new code. This was a first for them because Volano made their business more nimble and more efficient.

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