Exploring 'Real-World' Patient Data
In recent years, we’ve seen an explosion of tools that help us record and share information about our day-to-day lives.
Activity-tracking devices and smartphones generate data on our movements, location and behavior, while apps help us record our moods, pain, diet, sleep, and exercise. Online patient communities, along with devices like Internet-connected scales and blood pressure cuffs, can also create valuable information.
We find ourselves with new opportunities. This “real-world” data, collected in real-time, could give researchers a new window into how people experience health in everyday life, and lead to improvements in health care and public health.
We're exploring how patient-generated data can help researchers develop health outcome measures that better reflect patients’ experiences with a disease. Using the Open Research Exchange, researchers will be able to design and test health outcome measures with real patients from PatientsLikeMe’s 200,000-member community. The measures could aid development of new treatments that better meet patients’ needs. If you’re a researcher interested in piloting the new platform, let us know.
We've also launched the Health Data Exploration project with Kevin Patrick and Jerry Sheehan at Calit2 to investigate these possibilities. We're excited about the possibilities that breaking down barriers and bridging fields could create. We're working to bring companies who collect this real-world, real-time health data together with researchers who can mine them for new insights.
Would you be willing to share the data that you or your customers track for purposes of research? What barriers prevent this type of data from being used in research?