PitBull008
New member
Why you should take this survey?
You probably have heard about the new practice of medicine, Precision Medicine. In the current world of digitalization, medicine cannot escape the trend, and we are now more than ever in a data-driven medicine age. The data we generate over time has gained more and more importance in our “digital life”, but as well in our patient life. It is not anymore just medical data, but lifestyle, behavior, nutrition, activity data, genetic or genomic data, wearables and Internet of Things objects data.
1- This data is important for you the patients, and for you the caregivers. It is complicated to collect and gather all of this data in a single place, controlled by you, to make sense of it, and to monitor over time to appreciate your health status.
At CFTechnology.org we are working to bring you a digital solution to facilitate data collection on a day-to-day basis. We have identified CF biometrics, data, that are important to CF patients, and we want to customize this project with direct input from you, getting your feedback, with suggestions for data types you find the most important for you.
2- This data is important for research in Precision Medicine. Scientists, researchers from the academic world, and the pharmaceutical and healthcare industries never had access to as many data as you the patients can provide them today. Being part of this new process of Precision Medicine that requires sharing your data is key to accelerate discovery for new personalized treatments. It is a new opportunity for the patients to be part of this process as partners, not anymore as patients only.
At CFTechnology.org we are working to bring you a digital solution to facilitate data sharing with academics and industries, a solution that preserves your data privacy and data ownership like no other solution we have seen so far. We want to get your feedback about using this solution in our community.
3- This data is your asset. You are working hard to collect data day after day and most of all, you pay high premium to practitioners, therapists, insurances, pharmacy, drugs companies to get this data and build your own health story. When it comes to sharing this valuable data with for-profit organizations, you need to be consider as a partner and be retributed for the value of your data and for your work.
At CFTechnology.org we want to explore the business models of Precision Medicine and involve the patients in the monetization of their data. Everyone knows the digital space is about making money from data exchange. The health industry is making billion of dollars from our data, this is no mystery. We want your feedback about your perception of this market place and data business to understand your level of interest in the monetization of your own data.
4- This is an opportunity to be part of a group of early adopters at CFTechnology.org and to be provided Portable Genomics iPhone Application (our digital solution partner) customized for CF patients.
We want you to participate in a pilot study with us, a study that includes as well device makers and genomic data providers, to demonstrate academics and the industry, that our community understands the value of data, is engaged into collecting data and sharing data, to accelerate research, in a process that redefines patients as the new partners of the Precision Medicine industry.
The survey is easily found at www.cftechnology.org
You probably have heard about the new practice of medicine, Precision Medicine. In the current world of digitalization, medicine cannot escape the trend, and we are now more than ever in a data-driven medicine age. The data we generate over time has gained more and more importance in our “digital life”, but as well in our patient life. It is not anymore just medical data, but lifestyle, behavior, nutrition, activity data, genetic or genomic data, wearables and Internet of Things objects data.
1- This data is important for you the patients, and for you the caregivers. It is complicated to collect and gather all of this data in a single place, controlled by you, to make sense of it, and to monitor over time to appreciate your health status.
At CFTechnology.org we are working to bring you a digital solution to facilitate data collection on a day-to-day basis. We have identified CF biometrics, data, that are important to CF patients, and we want to customize this project with direct input from you, getting your feedback, with suggestions for data types you find the most important for you.
2- This data is important for research in Precision Medicine. Scientists, researchers from the academic world, and the pharmaceutical and healthcare industries never had access to as many data as you the patients can provide them today. Being part of this new process of Precision Medicine that requires sharing your data is key to accelerate discovery for new personalized treatments. It is a new opportunity for the patients to be part of this process as partners, not anymore as patients only.
At CFTechnology.org we are working to bring you a digital solution to facilitate data sharing with academics and industries, a solution that preserves your data privacy and data ownership like no other solution we have seen so far. We want to get your feedback about using this solution in our community.
3- This data is your asset. You are working hard to collect data day after day and most of all, you pay high premium to practitioners, therapists, insurances, pharmacy, drugs companies to get this data and build your own health story. When it comes to sharing this valuable data with for-profit organizations, you need to be consider as a partner and be retributed for the value of your data and for your work.
At CFTechnology.org we want to explore the business models of Precision Medicine and involve the patients in the monetization of their data. Everyone knows the digital space is about making money from data exchange. The health industry is making billion of dollars from our data, this is no mystery. We want your feedback about your perception of this market place and data business to understand your level of interest in the monetization of your own data.
4- This is an opportunity to be part of a group of early adopters at CFTechnology.org and to be provided Portable Genomics iPhone Application (our digital solution partner) customized for CF patients.
We want you to participate in a pilot study with us, a study that includes as well device makers and genomic data providers, to demonstrate academics and the industry, that our community understands the value of data, is engaged into collecting data and sharing data, to accelerate research, in a process that redefines patients as the new partners of the Precision Medicine industry.
The survey is easily found at www.cftechnology.org