AllofUs Research Program
In the spirit of continuing to contribute to my vision of leveraging data and technology to flip healthcare on its head, I signed up for the AllofUs Research Program. Per the website:
The All of Us Research Program has a simple mission. We want to speed up health research breakthroughs. To do this, we’re asking one million people to share health information. In the future, researchers can use this to conduct thousands of health studies.
I completed an online application (from my phone) back in July and they contacted me fairly quickly to schedule a 30 minute appointment to gather some data and some samples.
The online application was very easy to complete and captured not just health data but some social determinants of health related questions as well. To simply focus on health data and not take into account how we live our lives is myopic in focus and misleading. After participating in the Project Baseline data intake and process, I was impressed by the application.
While I didn’t receive a reminder call or email, I showed up for my 30 minute appointment today at UCSF’s Mount Zion location in San Francisco. I was warmly greeted by Roxabeth who quickly and capably took me through their process. I gave some blood, some urine (that was funny…walking down the hall with the sample in a cute, little black bag), and some measurements. She also took my blood pressure.
Given my experience with clinical systems, I noticed they use RedCap to capture the data. This is a true clinical system unlike the Google Form that my friend Donna had to use when capturing my medical history during my Project Baseline appointment which lasted two days and required what I fondly refer to as the poopsicle sample. Read more about the experience in my post from August 2017. (Look for another update in September as I am going back for my one year follow up appointment).
I started talking to Roxabeth about the system (RedCap) and she had to ask how I know so much about the system and the data. This led to me giving her some of my background and that I am participating in Project Baseline. I mentioned my friend worked for Stanford and did the health intake and she asked who my friend is. Small world; my friend Donna Williams is one of Roxabeth’s mentors. I had to take a picture and share it with Donna (and now all of you) to show just how small the world really is. And I am pretty sure Donna told me about the AllofUs study.
Roxabeth sees about 7 people a day. I don’t recall how many clinical sites there are but in order to get to 1,000,000 people, they have their work cut out for them. They are at about 250,000 at the time of this post. I am sure I was the most curious and friendliest (especially since I gave her a hug when I left!).
I left with a sheet with some of my vitals on it and some info about where I fit into the normal ranges for what she gathered today (my diet really needs to start working soon!) and a $25 Safeway gift card (and a little less blood). Unless they find something unusual, I will most likely not hear back with any further information which is fine with me. I am contributing to the research database which hopefully leads to better understanding of many people (not just white males) and the development of better diagnostic and therapeutic tools.
If you decided to join either study, please share your thoughts and experience. I’d love to hear all about it.
