Health Data Cooperatives, a healthy way to go!
Viewpoint by Andre Boorsma (TNO, NL)
What would happen if people took ownership of their health and lifestyle data? How might people benefit, in the short- and long-term, through financial incentives or better understanding of disease and improved treatments?
Nutritional Researcher Cohort
These are a few of the important questions the Nutritional Researcher Cohort (NRC) is trying to answer. The NRC is gathering data on lifestyle and health using different types of self-assessment. For example, DNA analysis by companies such as 23andMe and numerous options offer blood testing and even microbes in the gut (e.g. uBiome). The wearables market has exploded and devices that track activity, sleep and heart rate are getting more accurate, and are increasingly attractive to large sectors of the population. NRC is using these resources amongst nutrition researchers who are also able to help develop methods for collecting other nutrition- and health-related data.
This study is working with 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. Like the NRC, these researchers have the dual role of both participants and investigators; they are able to propose new studies based on datasets they own or employ the NRC platform to validate new self-assessment methods across different countries.
Beyond the n250 study
Ultimately, the NRC 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 and give participants personalised nutritional advice, based on food intake, genetics and blood values for a variety of biomarkers.
Health Data Cooperative
NRC is the first step towards a Health Data Cooperative where participants enter personal information, and the resulting datasets are exploited to deliver personal advice packages. They empower participants to adopt a more healthy diet and lifestyle and participants have full control over their data; they decide with whom data are shared. It is hoped the Health Data Cooperative will make a fundamental change in healthcare.