Putting People at the Heart of Health Research
Three ways Verily’s Project Baseline is humanizing clinical research
This month marked the two-year anniversary of Project Baseline, Verily’s initiative to map human health. We started with a longitudinal, observational Health Study in partnership with Duke University School of Medicine, Stanford Medicine, and Google. Now, we are expanding the platform with additional studies and opportunities for people to contribute to research.
Taking part in a clinical study can feel, well, clinical, so that even if people understand the value of research, they may be reluctant to get involved because they fear being treated like human guinea pigs. Clinical trials in particular have a troubled history, as basic human rights — such as informed consent — were not always enforced or respected.
But what if volunteering for research was actually a positive, meaningful part of people’s lives? What if it could give people a sense of meaning, purpose, and community? When we started planning Project Baseline, we set out to answer these questions by applying Google’s best design practices to humanize clinical research. Here are three core pillars of our approach and how we hope to build on this foundation in the years to come.
1. Collaborative Design
From day one, we’ve seen our study participants as partners and team members. Without people who are willing and excited to get involved in research, we can’t develop tools and technologies to accelerate health discoveries and better predict, prevent, and treat disease.
That’s why we create regular opportunities for community members to give input, which directly informs study design. For instance, thousands of participants have completed satisfaction surveys in the app or given their opinion on early prototypes in a video call. We then use their feedback to steer our roadmap, prioritize features, and improve the experience.
Our design team even constructed a full-scale bedroom in our office and brought people in to test unboxing and setting up a sleep sensor and other devices — mimicking the real at-home experience. Based on these observations and feedback, we made improvements like revising the instruction manual to explain tricky steps and adding a much-requested outlet extension to the take-home kit.
Early data — including 90% satisfaction among Health Study participants — suggests that this kind of close partnership and ongoing feedback loop helps create a positive experience. Importantly, it also enables us to conduct research more effectively, because we’re able to discover and address barriers that might otherwise cause people to stop engaging. As the community expands, we’ll continue ensuring that everyone has a voice.
2. Human Connection
A 2013 study concluded that the rapport between study participants and study staff may be the single most important factor for recruitment and retention. Beyond those outcomes, we aspire to build a mutually rewarding relationship with participants because it elevates our work. That starts with each personal interaction.
For instance, the teams at our Health Study clinical sites have strong ties to their local communities, which helps establish trust. Together, we consult their site-based advisory committees (made up of community representatives and leaders), regularly host appreciation events and live Q&As with study investigators, and feature participants in a Faces of Baseline series.
Human connection was crucial to addressing a particular challenge we observed last year: less than 50% of participants were completing the take-home stool sample kit. We interviewed a subset to better understand why (beyond the obvious — it’s gross!). Based on the insights they shared, we designed and tested a pilot program where our support team reached out to newly enrolled participants to welcome them and reiterate the next steps. After making these calls, the completion rate rose to 75% and participants reported that they appreciated the personal touch.
Even small gestures (such as mailing personalized holiday cards or signing emails with team members’ names and photos) and efforts to connect remotely (such as a live simulcast where participants and staff could see and talk to each other across the country) seem to make a difference. Moving forward, as we offer virtual studies and more digital activities, we are interested in exploring additional ways of scaling human connection.
3. Intentional Transparency
We also aim to eliminate the wall that traditionally stands between study participants and study staff through greater visibility. User testing of early versions of our website showed that privacy and confidentiality were key questions and concerns people expressed. So we made sure to be open and clear about what data we collect, how it is used, and who has access to it, so that people are informed before and after they decide to participate.
In most research, participants remain in the dark about study outcomes and don’t get to see their personal data. But we heard in surveys and interviews that people strongly want to, so we established a Return of Results Committee and started sharing individual results even while the research is ongoing. This includes urgent findings (like elevated lab values) as well as informative, engaging reports (like how people’s physical fitness compares to others their age). While this process is challenging and not always feasible, we believe that it’s an important step toward empowering people to own their health data and bridging the gap between research and care.
Enrollment survey data also revealed that the top reason for joining Project Baseline was to learn about research and science. So we communicate what our researchers and scientists are thinking and give updates on the progress we’re making together through exclusive newsletters, blog posts, webinars, in-person presentations, and even science journals that explain the clinical tests.
Reflecting on the first two years of Project Baseline, I’m proud of the way we’ve prioritized redesigning the participant experience for people in our studies. While there’s much more to do, I think we’re off to a great start. Moving forward, we will continue to iterate and build on these pillars in partnership with all Project Baseline community members, including study participants, patient advocates, physicians, data scientists, ethicists, and other thought leaders. Together, we aspire to co-create the best possible study experience, while achieving our scientific objectives.
Kasley Killam, Community Engagement Lead for Project Baseline at Verily