Health Data Cooperatives, a healthy way to go!
Viewpoint article by Andre Boorsma, TNO
What if people could really own their health and lifestyle data? What if this could happen in a truly transparent way? What if people would really benefit from this, in the short- and long-term, either through financial incentives or contributing directly to unravelling disease mechanisms and developing better treatments?
Nutritional Researcher Cohort
These are a few of the important questions the Nutritional Researcher Cohort (NRC – https://humanstudies.tno.nl/nrc) project is trying to answer. The project aims to gather self-assessment data on lifestyle and health, which is collected using different types of self-measurements and wearables. For consumers, it is possible to have DNA analysed by companies such as 23andMe. In addition, numerous companies offer blood testing, for nutritional and/ or clinical markers, and it is even possible to get the microbes that shape your gut quantified using the services of uBiome. The wearables market seems to have exploded this year; devices that track activity, sleep and heart rate are getting better and better, and are increasingly attractive to large sectors of the population. The NRC project is collecting these types of data, specifically from nutrition researchers who quantify themselves, and help to develop methods for collecting other nutrition- and health-related data.
At the beginning of this year, the n250 study started to which QuaLiFY is contributing. This study is aimed at 250 scientists from the life science and nutritional fields. The goal is to gather and validate self-assessment data on lifestyle, diets including bioactives compounds rather than just nutrients, and biomarkers of health and disease as well as genome, metabolome and microbiome data. The researchers have the dual role of both participants and investigators; they are able to propose new studies based on the dataset they own or employ the NRC platform to validate new self-assessment methods across different countries.
Beyond the n250 study
The NRC project is more than this: it aims to give participants access to information about their personal health trajectory, and the effects of diet on health. A number of services developed for QuaLiFY are built into the NRC platform. These will give participants personalised nutritional advice, based on their food intake data, genetics and blood values for different biomarkers.
Health Data Cooperative
The NRC project is the first step towards a Health Data Cooperative where participants enter personal information, and the resulting datasets are exploited to calculate and visualise personal advice packages. They empower participants to adopt a more healthy diet and lifestyle. As in the NRC, participants have full ownership and control over their data; they decide with whom the data are shared. Direct insight into the data, and getting feedback and advice on a personalised level, will help individuals to lead a healthier life. In the end, such a Health Data Cooperative will contribute to a fundamental change in societal health and healthcare.