The Cleveland Clinic has released an app version of its web-based Healthy Brains initiative which provides tools for patients to assess medical and lifestyle factors that may negatively affect brain health and offers practical tips to reduce neurocognitive risk. The app is being launched as part of a research registry focused on brain health.
When signing up for the app, users are given the option to consent for enrollment in the Healthy Brains registry. Enrollment appears to be required for app usage; saying no takes you back to the home screen.
The Healthy Brains app includes a brain health assessment that walks you through a series of questions related to medical history and lifestyle factors. It then assigns you a brain health score and provides tips on improving your brain health by addressing reported risk factors. On the website, enrollment in the registry is also required to take this assessment.
The app also includes a memory test and can be connected to a variety of activity trackers. All of these things can be repeated over time; in fact the app encourages users to repeat the test presumably in the hopes that seeing improving scores will reinforce positive lifestyle changes and vice versa.
As indicated in the study description within the app, they are capturing data that users enter into the app for future studies – that includes demographics, medical history, lifestyle factors, results of the memory test, and information from follow-up questionnaires.The registry also serves as a recruitment pool for related clinical research such as Alzheimer’s studies, which could help reduce some of the problems these trials face with enrollment.
Curiously, the app is not integrated with HealthKit and does not appear to use ResearchKit, which both seem like natural fits here. It’s possible that they are a few steps further ahead in the development roadmap. Alternatively it’s possible that given they already had this set up on the Healthy Brains website (consent and all), it was easier to bring the existing structure and design into an app than restart with ResearchKit.
This type of approach to clinical research is growing and has its advantages including lower costs, greater scalability, design flexibility, and extended reach. On the other hand, there are important limitations not the least of which is data quality. Even when I signed up here, my instinct was to make up a date of birth for identity protection purposes. I also may have been a bit generous with my self-assessed exercise frequency and diet quality. Essentially, this study design takes the biases & challenges of an observational study using patient-reported data and magnifies them.
That’s not to say these studies aren’t worth doing or won’t reveal important insights into any number of diseases. On the contrary, they will capture all kinds of data in ways that simply haven’t been possible before; we just don’t know what we’ll get until we give them a spin. It’ll be this first wave of “digital cohorts” that will help us understand the value and impact this kind of research can have in the long run.
