Improving clinical data collection for Parkinson’s participants

Background

The Parkinson's Progression Markers Initiative, sponsored by The Michael J. Fox Foundation, is the world’s largest Parkinson’s Disease observational study. The study management and data collection is completed through a custom electronic data capture (EDC) system.

The goal of this project was to improve the data collection experience for users with disease progression.

Problem

During each clinical visit for the study, there is a section of Participant Reported Outcomes to be completed by the participant. There were three challenges with this step of the clinical visit that we focused on:

Accessibility
Due to the demographics and symptoms of study participants—such as hand tremors or impaired eyesight—many users found the original form interface challenging to use.
Security
The app stores protected health information for all participants at that clinical site. Additional security measures were needed to ensure a participant could not navigate to another participant’s information.
Wayfinding
Participants are often left alone to complete this step of the visit. The digital experience needed to clearly guide them through all questionnaires and set expectations once they were complete.

Initial wireframes exploring ways to launch patient mode during a Clinical visit — *Initial wireframes exploring the concept of “patient mode” during a Clinical visit*

Creating patient mode

Our team created “patient mode” to implement additional accessibility considerations for participants with later-stage Parkinson’s Disease symptoms, such as hand tremors or impaired eyesight. Another important consideration was security. The PPMI electronic data capture system stores protected health information for all participants at that site. To address this security risk, I ensured that, once handed the iPad, any participant could not navigate to another participant’s information.

User research was needed for two groups—the clinicians who would launch patient mode and hand off the iPad to the participant, and the participants themselves.

*Clinicians can open Patient Mode when the participant is ready*

*The Patient Mode landing page guides the participant*

Schedule - Complete - 1.jpg — *The final state provides clear instructions for next steps*

The designs utilized existing functionality found elsewhere in the app, but used a new style sheet to create a more accessible experience

*Increased button and text size along with the option to “answer later” if a participant gets stuck are ways to make form completion easier on participants*

*As each form is completed, the participant is prompted to continue*

*If a participant attempts to navigate away from Patient Mode at any point, they are asked for a password, stopping the participant from accessing HIPAA information*

Whatever it is, the way you tell your story online can make all the difference.

Impact

Patient mode allows participants to enter data securely and directly into the electronic data capture software, resulting in:

Increased participation of users with later-stage Parkinson’s Disease symptoms
Better privacy for participants when answering sensitive questions
Decreased duplicative data entry
Ensured HIPAA compliance with protected health information

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