Fitness, Diet, Clinical, Genome, Microbiome Data, it is All Yours
There are ongoing efforts to merge your health data and have it in a central place. Other efforts involve transferring or exchanging your health data between hospitals and doctors and you look forward to not having to spend 20 minutes filling out the same paper form you filled out at another doctor’s office. Yes, that will happen, eventually. But should this central place that holds your data only serve your doctors or should the information it contains directly guide your life style and life choices? You have read that eventually, a smart computer will access your health data and make a faster, more accurate diagnosis or create a personalized treatment plan. You have read that such a system will make recommendations on your diet, your physical exercise regimen and even your social life and your career (work less, take time off). These recommendations will help you lead a happier, healthier and fuller life. It is already happening today, with apps like Fitbit and MyFitnessPal being pioneers in the field.
Today, doctors, clinics and hospitals have portions of your health data. It is spread across filing cabinets, devices, and the computers owned by these institutions. According to HIPPA regulations you can ask for that data but the data collected at a particular health provider belongs to him or her. Now consider this: 23andme and similar institutions have your genetic data but they don’t have your doctors’ health data. uBiome has your microbiome data but nothing else. Your Fitbit or similar fitness tracker has your fitness data but they don’t have your genetic data or your medical health history. You have been recording your weight and consumed calories in applications like MyFitnessPal, but nobody but you has that data. Ultimately, you have the right to access and own all that data and share it as you seem fit.
The insurance industry, the biotech industry, the pharma industry, and medical research institutions, all the big players in health research and the health industry, want access to your data, but you are not yet aware of how valuable it is or why you should collect and manage it yourself.
Today, a lot of your data is unusable, it is in your doctors’ file cabinets or buried in doctor’s notes, but that will change, and it is changing. It is changing not only for practicality or for medical research, but to grow the health care market economy. Eventually, you know it will happen, every doctor will be using an electronic health record system (EHR) or an equivalent technological solution. During your most recent visit to the doctor, you may have noticed your physician entering notes on a computer or laptop into an EHR. What solution will be adopted to collect and store your health data, we don’t know yet, as the industry is still experimenting with it, and may even resort to the Blockchain to store and transfer healthcare data. Whatever technology gets adopted, you know you will have access to your data in electronic format, and only you and nobody else but you should manage “access” to your data, the same way you manage access to your money and who gets it. Your health data is valuable, for many reasons and to many people, but foremost to you.
You will be able to share your data for different research initiatives, but consider that clinical trials remunerate the participants they recruit. You know the healthcare industry will make money from offering their drugs, devices and services to the public. Consider also that you spent thousands of Dollars on health insurance and doctor copayments and deductibles, on drugs and genetic testing and Fitbits and so on. By sharing your data you are offering a service to humanity, and it is valuable, therefore getting paid for your data makes only sense. On the other hand, you can chose to support the open science movement, and just like you donate money to charities, you can choose to donate your data for research. It is up to you.
Most importantly, your data is valuable to you, and it will become more valuable as new technologies are invented that personalize health diagnosis and treatments. You can start collecting your data now and study it yourself and gather knowledge from it to improve your life style and health. You can do it by joining a movement such as Quantified Self or with help from Omics Help Desk.
Now consider this statement posted in a 2015 article about getting your microbiome sequenced with uBiome:
“Finally uBiome, of course, has access to any signed-over data and can use it as they please, a fact that participants are well informed of and can opt out of if they wish.
But here’s the rub: While we know the microbiome is important (so important!), we’re just beginning our research into the specifics. And big data — your data — is the way to learn what a high firmicute to bacteriodete ratio means for health. Given that, it would be more appropriate for uBiome to pay you to swab your toilet paper than for you to give them $90 so you can learn what they can’t yet tell you.”
What this means is that maybe it is time to start collecting your data, make sure others only keep it if you decide to donate it, organize it in such a way that you can study it, and so that clinical trials and researchers can easily identify you as a person with data they need to study. Store your clinical data using health data standards such as FHIR and CCDA. The government is “Investing in the Future: New Market-Ready, User-Friendly Health Technology App and Infrastructure Support”, so keep checking on those developments and keep yourself informed. Store your genetic data in the same format that you receive it as no standards exists yet, and strategies to prepare genetic data for analysis are numerous and varied. Always remember to sign a contract to protect your data from being shared without your consent. Soon you will discover new apps and programs that analyze your data for you and help you style your life. And soon they will come knocking on your browser, app or email door and ask for your data and you will be ready to consider their offer.