Objective: Building a centralized platform to collect patient reported outcomes and provide educational and informational content to participants

Background: Patient portals are a valued healthcare tool providing a key touchpoint to clinical information and patient education. In clinical trials, portals can be utilized to disseminate research information in a streamlined manner. Successful use and uptake of these portals can be damped by limited technology experience and a wide spectrum of educational backgrounds by end-users, making it imperative that information delivery needs are ascertained through feedback cycles.

Method: Parkinson’s Progression Markers Initiative (PPMI) is an observational study with > 40,000 participants. A modern, mobile first approach was utilized to create a personalized participant portal called myPPMI. To enable a constant feedback cycle, individual APIs were built to understand the usage profiles of the content, without using cookies, limiting the need to store any personal data in an identifiable way. A singular interface ‘contact us’ page was deployed, which routed inquiries to designated support teams, allowing rapid follow up to participant feedback and questions. Where possible, light-weight technical architectures were used to limit overall bandwidth, enhancing performance for a mobile experience while maintaining personalization.

Results: myPPMI is a multi-lingual, secure, personalized portal for providing PPMI study information, educational content for Parkinson’s disease and related neurodegenerative disorders, and a built-in capability for collecting survey-based data. Utilizing multi-pronged feedback cycle with individual participant testing, focus-groups, and community input, we have been able to rapidly iterate on this platform with > 250 releases within the last 12 month and obtain >60% usage within our clinical population. Through myPPMI, we now promote in-person and virtual events along with presenting participants with a singular view into their trial experience including a new model for returning personal research information.

Conclusion: Participant focused, personalized portals are increasingly valuable in decentralized clinical trials for optimizing user experiences. We’ve shown here the ability to create a centralized platform within the large-scale PPMI study that enables both increased flexibility for web-based collection of PROs and provides participants with personalized experience.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/creating-myppmi-an-online-portal-to-deliver-study-participant-content/