2020 Precision Health Virtual Symposium
Evidation Health Director of Strategic Partnerships Bray Patrick-Lake was one of the speakers at the afternoon keynote address at the 2020 Precision Health Virtual Symposium, which focused on how health data is gathered and used in research and how the data is being used for patient care.
Patrick-Lake started her talk by saying that some time back, she had a health event that led to a clinical trial, and that clinical trial did not go well, partly because it was designed without input from patients and the community. She reached out to one of the investigators and set up an appointment to discuss the study’s methodology and what she and the investigator could do together to improve the study.
“I have now gone fully into the direct-to-participant model [of clinical research, with my work at Evidation],” Patrick-Lake said, “using digital technologies to connect patients and integrate their voice into research.”
Evidation was born out of the idea that datastreams created in everyday life can provide meaningful insights on and measurement of health. The company involves patients through an app that now has more than 4 million people connected and sharing information from health management apps and wearable data to its real-world data platform.
Patients and their outcomes have historically been characterized using limited, visible-to-the-system datasets. Using health data directly from participants can reveal novel insights at both the individual and population level. This is called person-generated health data (PGHD)
PGHD is wellness and/or health-related data created, recorded, or gathered by individuals for themselves, or by family members or others who care for an individual, including functional mobility data, sleep and weight data, as well as behavioral data such as digital utilization, consistency of use of digital health apps, and responsiveness.
Through Evidation’s platform, researchers can now enable the combination of all available objective data with key labels to identify how novel data can reveal important changes in health status at both an individual and a population level.
Evidation works with participants and community partners to shape the engagement plan to ensure there is value and relevance from their perspective. For example, the company worked with the website BlackDoctor.org to support a COVID-19 mental health survey. The two organizations co-designed research, working with community leaders to answer questions of importance and improve cultural relevance, then returned those insights to the community and supported dissemination efforts.
The Evidation Way for the science of patient input and participant engagement hinges on deploying community insights to better understand the population and co-design optimal research protocols. “The importance of gathering participant input cannot be overstressed,” Patrick-Lake said.
Finally, she told the viewers, we cannot enable and empower everyone to participate in better health outcomes if we do not take the time to thoroughly understand their experiences, challenges, and perspectives.
Watch the whole session here.