Dr. Eric Topol, director of the Scripps Translational Science Institute (STSI), is recognized as a national leader in digital healthcare. I follow him closely on Twitter and his tweets about various aspects of healthcare are always outstanding. He and Scripps have recently been awarded a $120 million grant for a totally new type of research involving "citizen scientists" (see: Scripps Research gets $120 million to change medicine). It is anticipated that the granular biomedical data will be captured and analyzed from one million American volunteers who represent the entire gamut of medical conditions and diseases. Below is an excerpt from the article:
Dr. Eric Topol will co-lead the effort to enroll and engage 1 million Americans in a study that will deeply explore people's health and regularly provide them with information that they can share with their doctors. The $120 million grant from the National Institutes of Health is part of the Obama administration's Precision Medicine Initiative, which will customize patient care through big advances in digital technology.Topol is one of the nation's best known digital medicine advocates. The Scripps Research Institute professor has been pushing medicine to use mobile sensors and smartphone apps to monitor and treat patients. He's also pushed doctors to tie treatment to a broader range of data, ranging from a person's genome to their diet to the air quality in their neighborhood and the microbes in their gut.
Topol's interests are reflected in the NIH's new all-volunteer study, which will last at least five years. People will use mobile and web apps to register and participate. The "citizen scientists" will be able to upload a wide variety of data, including blood pressure, heart rhythm, glucose levels and sleep and exercise patterns....Many people will be asked to give blood and urine samples so scientists can study their biological makeup, especially their genes, proteins and microbes. People who are served by certain health care providers also can have the companies upload their electronic medical records. Blue Cross Blue Shield and Walgreens clinics are among the companies that have agreed to help with the study. The San Diego Blood Bank will help collect blood samples. Apple and Verizon will spread awareness about the campaign. And San Diego's Qualcomm will help with the app's data security.The NIH will crunch this large volume of data to better understand the nature of illness and disease.
Here's a definition from the Wikipedia for citizen scientist (see: Citizen science): A member of the general public who engages in scientific work, often in collaboration with or under the direction of professional scientists and scientific institutions; an amateur scientist. From one perspective, one might suggest the one million American volunteers in the Scripps project are only permitting their personal health data to be analyzed rather than directly engaging in medical research. Therefore, to call them citizen scientists may be a bit of an exaggeration. However, I have come to believe that the term will be truly relevant for them. As this project evolves, I suspect that many of the participants will play an active rather than passive role and help to determine the direction of the project. Patients will thus help to determine the direction of precision medicine.
Needless to say in this age of sophisticated computer hackers, the STSI database will offer an appealing target for mischief (see: Hospital Records Commonly Being Hacked and Sold for a Premium on the Web). I will assume that extreme care will be taken to ensure that it will be secure. Note the involvement of Qualcomm in the project regarding computer security. In order to convince an expected one million "citizen scientists" to allow access to their personal health data, they will need assurances that it will be secure. It may actually end up being more secure than the data in their own home hospital systems.