Tag: quantified self
Patient-collected data
In April 2018, I participated in the 2018 Quantified Self (QS) Symposium on Cardiovascular Diseases held in San Diego. I was reminded of that session several weeks ago while attending the 2nd Annual Meeting of the Society for Participatory Medicine. In both conferences I was struck by the power of patients’ observations and measurements to manage their own diseases.
I first learned about the Quantified Self movement a few years ago while reading about Larry Smarr, an astrophysicist and computer scientist who started tracking his own exercise and weight but ultimately began expanding his self-tracking to include blood tests when he was told he had “pre-diabetes”. He ultimately diagnosed his own Crohn’s disease long before he had any symptoms based on analyzing his own blood and stool tests (including twice weekly stool microbiome analysis). He has since published a how-to guide in a biotechnology journal and participated in planning his own bowel resection for Crohn’s disease in 2016.
New types of evidence
It can be difficult to figure out how to use the results of research studies (randomized controlled trials or RCTs) to make a healthcare decision. There are many other problems with RCTs that may be less obvious.
First, to perform an RCT can take years – you need to get approval from the hospital where you are performing the study because you are doing research on humans. Then you need to get funding for the study so you may need to apply for some grants. After the study is completed, the results need to be analyzed; and then a paper needs to be written and submitted for publication to a journal. It could take years from the time the results are known until the time they are published.