Building the participant-researcher feedback loop for Project Baseline Fitness Reports

Nearly ninety percent of U.S. adults now use at least one digital tool to monitor health—from steps to sleeping patterns and more. But beyond optimizing personal wellbeing, can the "quantified self" push the boundaries of science more broadly?

At Project Baseline, we're on a mission to gather comprehensive health data to create a "baseline" that defines what it truly means to be healthy, and delineate the transition to disease. Our participants take a number of endurance, strength, agility, and balance tests at their annual study site visits, so researchers can aggregate and track changes over time. A key part of this effort is ensuring that participants have insight to their personal data—as well as a voice in how it's delivered.

In part 1 of our series on returning results, we covered Project Baseline's philosophy on sharing data, and how it differs from the norm in clinical trials. Now, we'll cover the latest set of individualized health information we returned to participants: the results of their physical fitness tests, or "Fitness Reports."

Building with participants

For us, delivering useful, interesting information starts by collaborating directly with participants. We aligned on our guiding principles for returning Fitness Reports by interviewing participants and prioritizing what information matters most to them. Our research showed that participants want to understand what their data means in context, and how it may impact both scientific discovery and health. With this foundation in mind, we were able to align on core design questions and considerations, including:

• Do participants understand what results mean for their health?
• Do reports answer questions participants may have?
• Do participants understand what the visual charts are showing them?
• What data comparisons do participants want to see?

Delivering more engaging reports

Final Fitness Reports were co-designed by Project Baseline user experience teams and study participants through user testing and iterations. We invited diverse participants to review early designs and provide feedback on everything from report navigation to specific data points.

The Fitness Reports cover endurance, agility, balance, and strength. Early versions of these modules included three core portions: a brief summary of the test, the participant's individual results, and a chart showing how their score compared to those with similar backgrounds.

When giving initial feedback on this structure, participants found much of this data helpful—but questions remained. For instance, people wanted to know whether the comparison data were population averages or study-specific values, an important factor for interpreting the results. They also wanted a more textured explanation of why standing on one leg, for instance, could be an important data point for researchers.

We iterated based on participant input to update the modules with more context all around. When we had comparative data to show participants' results against other "people like you" across the US population, we included it, and defined these groupings. We also enhanced the test descriptions to include more valuable information on what they can mean for health, including resources for further learning. The final Fitness Reports included the following categories:

• Description of the test, how researchers arrived at results, and what the numbers mean
• Results of each test
• Comparisons to similar individuals
• Why this information is helpful for understanding human health
• Useful information and fun facts about fitness and health
• Additional resources to learn more

The types of information shared and specific components of the reports—such as the additional resources—were often a direct result of participant feedback. Here's what one module of a Fitness Report on balance looks like today:

Prioritizing return of results

Tackling the challenge of returning results takes teamwork and dedicated resources. Along with conducting participant interviews, we established an expert Return of Results Committee focused on establishing clear guidelines and processes. Our committee includes participant advocates and thought leaders in medicine, clinical research, bioethics, and genetics. Read about progress to date and where we're headed next in this article by Dr. Charlene Wong, co-chair of the Return of Results Committee.

Working with participants and experts to share data in an engaging way is one of the most rewarding aspects of Project Baseline. If you're a Health Study participant, check your app to access your personal Fitness Report. To our participants especially, thank you for your partnership—mapping human health begins with you!