Health Data Insights
Focus on optimizing wellness through longitudinal data collection, integration and mining of individual data clouds, enabling development of predictive models of wellness and disease that will reveal actionable possibilities.
What can we learn from others who are healthy?
P1 whole genome sequencing
P2 clinical and functional laboratory testing (every three months)
P3 gut microbiome (every three months)
P4 quantified self and traits (physical activity, sleep, weight, blood pressure, personality and lifestyle factors, happiness factor and so on)
Connie’s comments: It is time that we have a voice in our health, that we can share with others so that others might learn what makes a healthy person.
I added happiness factor above to see what data insights can be derived from a 100k population who are happy and healthy.
Does screening asymptomatic individuals potentially cause psychological distress?
There is a common myth that if a healthy individual receives information (especially genetic information) revealing increased risk for a disease that is not currently treatable, it will lead to anxiety, depression or other psychological distress. However, a fairly large body of literature contradicts this assumption. For example, Bloss et al.  looked at the responses of more than 2,000 healthy adults to direct-to-consumer genetic testing over one year and found no overall increase in health-related anxiety, with <3% of the sample reporting any degree of test-related distress. Conversely, 62% perceived the testing to be ‘of high personal utility’. Similarly, a meta-analysis of studies where people were told their genetic risk for obesity, heart disease, depression or diabetes revealed no impact on individuals’ perceived control or ‘fatalism’ . Perhaps most striking, Green and colleagues  analyzed the psychological impact of receiving information on personal genetic risk for Alzheimer’s disease in individuals with a family history of this currently untreatable disease. They found no difference in anxiety or depression up to one year post-testing in those who received genetic results versus those who did not, regardless of whether they had the high-risk allele or not. Thus, on the basis of current evidence, one cannot argue that a positive finding in a screening test causes psychological distress, regardless of whether or not treatment or prevention is available. This concern is particularly unlikely in the HPWP where only actionable findings are being reported.
False positives and negatives
It is inevitable that screening thousands of data points will generate false positives, as well as false negatives, and we take this concern seriously. One reason for the necessity of conducting a project on a very large scale (that is, the 100 K project) is so that appropriate analytics and methods development can be performed to improve the reliability and reproducibility of results, reducing the problem of false positives and negatives. Another key approach that we are using in the HPWP is thoughtfully tailored messaging and communications with participants about the likelihood of false positives and negatives, so that they can make well-informed decisions. Utilization of health coaches, advised by physicians, to discuss study results and provide appropriate context about false positives and negatives, particularly for newer technologies such as gut microbiome and whole-genome sequencing, is another essential element of our approach.