What is digital health?
From the Desk of Dr. Danielle Meadows
Vice President of Research Programs & Operations
It’s no secret that traditional ways of conducting research have their limitations, especially for people with severe ME/CFS and Long COVID. There are more modern ways to design clinical research studies that incorporate digital tools, though, so this month I want to talk about digital health and how it impacts the first three stages of the research process.
Digital health opens up new components of clinical research design, enables new ways of collecting data, and can even impact data analysis processes.
The Heart of the Matter
- Digital health in clinical research means using tools like smartphone apps and wearable devices to help people take part in studies.
- It can make studies easier to join from home, keep people engaged over time, and speed up research by reducing the need for in-person clinic visits.
- In ME/CFS research, this is especially important because it can lower the risk of triggering post-exertional malaise and include people who are more severe.
- OMF’s Melbourne ME/CFS Collaboration has developed a novel digital health tool as part of their Personalized Treatment Trials project.
What is digital health?
In the context of clinical research, digital health describes the use of technology to conduct studies on human health (e.g., research on treatment for disease). That technology can include things like mobile health applications, wearable devices, and more. Mobile health applications often incorporate participant-facing interfaces with wearable devices and other digital tools, so I’ll focus on those applications as the primary example of digital health in the next sections.
The impact of digital health on research
The biggest impact of digital health on research comes from enabling decentralized studies—studies that aren’t centralized around a specific clinic. Therefore, digital health helps:
- Meet people where they are – Digital health opens up new ways for people to participate in a study (e.g., at-home collection kits vs. an in-person study visit), so it can lower participant burden and remove geographical barriers.
- Increase engagement and retention – It can be very difficult to maintain active participation in longitudinal studies, so digital health making it easier to participate can help limit missing data and people dropping out of the study.
- Remove siloes for data sources – Some digital health tools can help merge disparate sources of data, which can streamline data analysis processes.
- Accelerate timelines – Digital health can automate a lot of clinical research operations and alleviate the need for time-intensive in-person study visits.
- Unlock new outcome measures – Integrating digital tools makes new objective outcome measures (e.g., heart rate variability from wearables) available, which is especially important for ME/CFS research that traditionally relies on self-report measures.
Why digital health matters for ME/CFS research
One of the biggest impacts of digital health on ME/CFS research is in how it opens up new ways of participating. Lowering participant burden overall and enabling more streamlined ways of allowing caregivers to assist participants facilitates the inclusion of people with more severe ME/CFS in studies. Reducing the need for in-person study visits can also help alleviate the likelihood of inducing post-exertional malaise.
OMF’s Melbourne ME/CFS Collaboration is exploring how custom digital health tools can improve data collection from people with ME/CFS as part of their Personalized Treatment Trials (PTT) project. They developed a novel symptom tracker application that can be personalized to each participant. Read more about the app and the PTT project on our website.
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