I am a true believer in leveraging data and technology to flip healthcare on its head. We spend too much on acute care and not enough on preventive care and early diagnosis of diseases, leading to high costs of medical care and lower quality of life.
We are now in a position to gather and leverage this data to identify new bio markers and indicators of infections and disease states and better manage and treat these disease states.
And I want to be part of this. I am already investing in digital health companies and also consult with biotech, medical device, and diagnostic companies but I want to do more.
This is where Project Baseline comes into the picture. Project Baseline is Verily’s “quest to collect comprehensive health data and use it as a map and compass, pointing the way to disease prevention.” Verily (an Alphabet company), in partnership with Google, Stanford Medicine, and Duke University School of Medicine, is conducting a 4 year study of 10,000 people of diverse backgrounds, ages and health. And I am patient #12.
I spent two days last week at Stanford Medical Center in Palo Alto, California, volunteering my body, health data, fluids, feedback, health history, and other unmentionables (refer to the picture above…although truth be told, I haven’t finished the last item) to a data set that will be aggregated and analyzed to further science and improve the health of individuals.
I left on day one with a goody bag which included a Google watch. I think this needs to be more like a FitBit because now I am wearing my Apple Watch on one wrist and the Google watch on the other. The Google watch provides me with nothing but the time although I did appreciate being able to choose from one of eight watchband colors. It’s not unattractive but it seems that Google didn’t take into account that some of us already wear a smart watch with useful-to-us functionality.
I also got an off-the-shelf sleep sensor that is now under my mattress. I am assuming that I will get real data about how bad of a sleeper I am. This, I already knew, but perhaps they will take that data and combine with other factors to identify disease risk factors.
And I now have a device that communicates my sleep data, and the other data that is being gathered by the watch, that is a few feet from my bed so I have yet another set of charging and communicating devices. The watch needs to be charged weekly and the data is communicated to HQ at the same time. And daily I do an ECG reading from the watch that is also sent in the weekly data upload.
The clinical / medical folks at Stanford were exceptional. It didn’t hurt that one of my best friends, Donna Williams, was the nurse who took down my medical history and gave me the pulmonary tests. Fortunately, Donna knows my parents and my sister because when we got on the phone with them to get some more data, she patiently listened to my mom rattle off inconsequential medical information like how our dog had an allergy to bees and we had to have an Epipen on hand at all times. Donna and I laughed pretty hard at that one.
The data intake forms for the medical history were absolutely terrible and it was painful to watch Donna have to deal with them. It was like Google simply put together a data intake sheet using Google Forms without taking into account how the data would actually be captured by a medical professional. I implemented a medical information system over 15 years ago that had better functionality. And there were way too many open text fields that are going to lead to bad data gathering or require significant scrubbing to be relevant. If anyone at Google or Verily is reading this, I can help you out with this problem.
This needs to be an enterprise, medical system that takes into account the way in which medical providers work. For instance, there was one blood pressure test that was taken of both my arms and my ankles/feet. The intake form has the medical provider entering data in an order that is not consistent with the way they were trained to take the blood pressure. This will lead to incorrect and inaccurate data because the medical providers will not always record in the system the way the blood pressure is taken.
Everything was relatively easy and pain free. They did take 1.5 cups of my blood but fortunately I have a good vein so it went pretty fast. I had to drool into a vial which was awkward but not difficult. (I thought it was so much fun that I went home and did it again for a Color genetic test.)
The eye exam was a bit stressful but that’s because I have an issue and am concerned about passing my vision test for my flight medical (I am a commercially rated helicopter pilot). I had a vitrectomy last October to correct a macular hole (not to be confused with macular degeneration) and have become quite familiar with the various machines used to check for eye issues. Apparently the Stanford eye doctor found something that I may not have been aware of (oh joy). The scans will be provided to their eye specialist and then sent to me if there is something to be concerned about. I’ll take it to my retinal specialist for follow up…hopefully he already knows about it.
During one of the other tests, some sort of heart/stress test, I was reminded of how much of medical testing is not designed for women or doesn’t take into account women’s body parts. They actually wanted me to walk briskly on a treadmill without a top or a bra because of the sensors and the need to perform an ultrasound of my heart immediately after I got off the treadmill. We tried one of their zipper front sports bras which was laughable. Someone did not think through how it would actually work with actual breasts. As soon as I zipped it up, it immediately unzipped and flew off. Not really all that functional.
Fortunately we compromised with no bra for the ultrasound, sports bra for the treadmill, and then raising the bra to expose the parts my chest for the ultrasound wand as soon as I laid down on the hospital bed. Fortunately I am talented and we were able to make it work but someone really needs to start taking into account women’s bodies when these tests are designed.
We took a field trip to the Stanford Hospital for a chest x-ray and CT scan on day 2. The good news was that the sports bra I was wearing had no wires or metal and I was able to keep it on for the chest x-ray. Bonus!
There’s one thing I still need to do and it’s a pretty crappy item if you get my drift. It’s bad enough that the sample has to be taken but the Cool Whip sized container also needs to be frozen for 12 hours so that it can be shipped to Rutgers University for testing. The motivator for me is that I know how much data is contained in my gut and there’s some really interesting research on the gut’s microbiome. I am very curious about the results of these tests.
So now the big question is whether I get access to the data and how much I get access to. I am hoping for a portal that will provide all of the results of the tests with minimal analysis (high, low, normal, abnormal, etc.) but I am not holding my breath after seeing the medical history intake form. It would be really helpful to take the results to my doctor(s) to put together a plan to improve my overall health.
Hopefully the results come back healthy enough to NOT require quarterly visits but it would have been great to have had quarterly, longitudinal data to look for patterns over time . I’ll have my baseline data that can be used to define my ‘normal’ which may be different from the ‘normal’ of everyone else. But then again I don’t think I want to have to do the last test more than once a year…it may take that long to get over the mental trauma.