Collaboration is key to advancing digital measurement innovation for Parkinson’s Disease

November 19, 2024

“Instead of starting from scratch, we aimed to leverage DiMe’s existing work to create an inventory, which would serve as a single source of truth for the ecosystem.”

Yuge Xiao, Associate Director, Clinical Research, Michael J. Fox Foundation

Yuge Xiao

Associate Director, Clinical Research
Organization: Michael J. Fox Foundation
Industry: Nonprofit organization to advance Parkinson’s disease research
Location: NYC

The Michael J. Fox Foundation (MJFF) is a 501(c)3 nonprofit organization that funds research to find a cure for Parkinson’s disease (PD) and improve therapies for those with the disease.
The organization identifies and funds projects most vital to patients and spearheads solutions around seemingly intractable field-wide challenges.
MJFF coordinates and streamlines the efforts of multiple, often disparate, teams, doing whatever it takes to drive faster knowledge turns for the benefit of every life touched by PD.

Developing validated digital health tools is challenging, especially in a field as complex as Parkinson’s disease (PD) research. DiMe recently worked with the Michael J. Fox Foundation (MJFF) to expand the open-source Library of Digital Measurement Products to unlock shared innovation in PD research and beyond. The collaboration reflects DiMe’s commitment to pre-competitive partnerships to deliver open-source standards and frameworks that simplify complex digital health problems and advance effective solutions.

Yuge Xiao, who leads MJFF’s work on digital measures in clinical research, recently shared insights on this partnership with DiMe, highlighting how the effort is helping the PD community maximize the potential of digital tools.

A shared mission to build open-access resources

DiMe’s emphasis on collaboration and pre-competitive innovation drew MJFF’s interest in a partnership from the start. Open-access resources and tool standardization address a major need in the digital health field, particularly in measuring patient outcomes across diverse conditions. MJFF initially partnered with DiMe on the Core Measures of Physical Activity project in seeking to incorporate insights from Parkinson’s research into the digital health sphere.

“The digital space involves so many stakeholders, making it essential to learn and adapt together,” Xiao shared. “DiMe’s leadership is a key piece in bringing together this multi-disciplinary community,” she added, emphasizing how the partnership creates a path forward for all stakeholders invested in digital health.

Building a centralized inventory of digital measures

One key outcome of the DiMe-MJFF collaboration was the expansion of the Library of Digital Measurement Products with solutions tailored to PD research and care. The library, a centralized, open-source tool cataloging validated digital health tools, was a natural collaboration point for MJFF.

“Instead of starting from scratch, we aimed to leverage DiMe’s existing work to create an inventory, which would serve as a single source of truth for the ecosystem,” said Xiao. The inventory concept was born from a stakeholder roundtable co-hosted by MJFF, where participants highlighted the overwhelming diversity of digital tools and the need for a cohesive library to catalog these measures.

By organizing the available digital measures into an accessible format, the library empowers the entire digital health community to understand the breadth of available tools, see where research is concentrated, and identify critical gaps. Xiao explained that this not only saves individual organizations time but also maximizes the impact of patient contributions by reducing the need for redundant participation in similar projects.

Why pre-competitive partnerships matter in digital health

The DiMe-MJFF collaboration is grounded in a pre-competitive model, where industry and academic partners join forces on shared challenges. “In PD research, most groups agree that competing on the therapeutic product—not the measures themselves—yields better outcomes,” said Xiao. For PD, which affects millions worldwide, this collaborative approach has proven invaluable, creating a unified knowledge base to maximize insights and improve patient outcomes faster than isolated efforts would allow.

As word of the digital measures library spreads, MJFF is already seeing its impact, from shaping internal digital strategy to advising industry and academic partners on promising digital measures for clinical research. “The more we learn from each other, the faster we can move the field forward,” Xiao noted. In alignment with DiMe’s commitment to open-access resources, MJFF plans to encourage organizations to publish evidence and share tools through the library, making the resource increasingly robust.

DiMe and MJFF envision the library becoming an ever-growing source of validated digital endpoints and methods for testing measurement algorithms. By regularly updating and expanding the resource, the DiMe-MJFF team aims to set new standards in transparency and data sharing across the digital health community.

Continuing to partner for good

Reflecting on the partnership, Xiao highlighted how DiMe’s diligence and innovation have been key to building this foundational resource. “DiMe’s been an amazing partner to work with,” Xiao shared. “They’ve brought the field together in a way that’s accelerating digital measures for everyone.” As the library continues to expand, it stands as a testament to the power of shared purpose and open collaboration—empowering researchers to make measurable progress for PD and countless other conditions.

The DiMe-MJFF collaboration on the Library of Digital Measurement Products is just the beginning. As digital health grows, partnerships like this will continue to shape an interconnected, effective landscape for digital measurement—an endeavor DiMe is proud to lead as we work toward a healthier world powered by digital health innovation.