San Diego, June 26, 2018, in a private survey conducted in May, data was obtained from 288 Cystic Fibrosis (CF) patients and caregivers about their interest in obtaining, monitoring and sharing their personal health data for research and Precision Medicine.
From the results (infographics below), 87% of the participants reported that tracking data is important for monitoring their health status. Moreover, If tracking could be easier 91% would track data more often. In addition, when facilitating data collection by using a digital tool was suggested, 92% of the participants were interested in using Portable Genomics NuMe App. The NuMe App includes data collection modules for CF, Myositis, Multiple System Atrophy, Peroxisomal Disorders and is customizable for other diseases. Patients can join the community of NuMe App users by registering on the application web site at http://nume.website .
When asked about their willingness to share data to accelerate research in Precision Medicine, 96% replied they would share their health data with academics and 86% with Industry. Of significance, 80% stated that compensation is an important factor in deciding whether or not to share their data. Of those surveyed, 37% of the participants would require cash compensation, 29% would require a free device (wearable, medical device), 16% would require a free lab test and only 2% would prefer being compensated with cryptocurrencies.
While previous surveys have reported that patients are willing to share data for research, their specific willingness to share data with Industry has not adequately been explored. In this survey, 86% of respondents expressed their willingness to share data with Industry. This is very new information in the context of Precision Medicine. It is now important for 80% of the respondents to be compensated for sharing their personal health data. Finally, it is a new and important finding that patients want to be compensated for their health data in cash, a compensation that includes devices and lab tests, rather than coupons and even cryptocurrencies.
About Portable Genomics
Portable Genomics is a San Diego-based privately held digital health company revolutionizing personal medicine with the development and commercialization of a mobile platform that enables users to collect, aggregate and share their valuable medical, genomic, behavior and lifestyle data. Through this technology, Portable Genomics seeks to empower patients to control their data and enable users to share data with healthcare providers, patient groups and life science organizations for improved healthcare and targeted drug discovery. For additional information on Portable Genomics please see PortableGenomics.com or the NuMe App website. The full infographics image can be downloaded here.
Patrick Merel, Ph.D.
Founder and CEO