Project Baseline Annual Visit: Well That Was a Crappy Situation
First of all, I need to start by saying that with one exception, the Project Baseline staff at Stanford has been exceptional. They are friendly, informative, encouraging, and generally have a great sense of humor.
With that out of the way, it’s time for a review of my first year with Project Baseline. For those of you late to the party, here’s a link to my post last year after my initial two-day visit to Stanford.
I scheduled the appointment for Thursday, September 6th and blocked off half day for the appointment. It wasn’t made clear to me how much time they were going to need as the person scheduling didn’t provide that information. I also didn’t get a reminder email, call or text before the appointment and had forgotten the address. Fortunately I was able to look back to my appointment from the prior year to get the address. I wonder how this is working out for less organized participants.
I was greeted warmly and we got started on basics like temperature and blood pressure and a urine sample. This was followed by a significant blood draw (fortunately I have good veins), a saliva sample, and then an eye exam. The same gal performed my eye exam as the previous year so I asked about the unusual finding she had commented on last year.
She seemed confused by my question and seemed to struggle with providing a coherent response to my question. Ultimately she said that a Stanford eye specialist had looked at the scan and concluded that what she saw was the scar tissue from my macular hole surgery. At this point, frustrated by the communication challenges I was having, and a little frightened, I got angry. My surgery was in my left eye and she had raised concerns on something she saw on my right eye.
This had me wondering if she was telling me the truth or if the other doctor who had reviewed my case made a mistake and therefore there was still a question about what the issue was.This pissed me off. Last year, when she asked me if my retinal specialist was monitoring anything in my right eye and I told her what he was following, she asked if there was anything else. She seemed quite alarmed about what she saw which made me very nervous. But she wouldn’t/couldn’t tell me what it was. I was pissed off because, it appeared to me as if the issue wasn’t effectively resolved. If she hadn’t said anything the prior year, this wouldn’t have been an issue at all.
Fortunately, I had my 6 month follow up appointment with my retinal specialist at Palo Alto Medical Foundation the following week and he couldn’t find anything. He did say that the technology that is being used for the Project Baseline eye exams tends to display misleading artifacts. I am trusting him, not the Stanford eye examiner (and she better not be the one examining me next year).
The rest of the appointment was fine and we were done within four hours. But then they gave be me the dreaded poopsicle box. I had made a comment about it when I initially walked in and my comment was casually ignored. Well played!
If you read last year’s post, you may recall the dreaded poopsicle. They are looking at gut biome data and therefore need a Cool Whip sized container sample that needs to be frozen before it’s sent to New Jersey for testing (and storage?). Last year, I prepared the sample, scheduled the pick up, and then had to follow up because FedEx hadn’t picked it up. Somehow they managed to get it picked up and I am assuming it was ok. I have no visibility into this so I don’t know.
When I scheduled the pick for this year (after the dreaded sampling part…this year I used part of it for my Viome test, too) I told the Project Baseline hotline person about the screw up the prior year. Well that must have jinxed it because despite the fact I got a confirmation call on the pickup date and window, at 4:45 pacific time, I received a text from my husband that it hadn’t been picked up (pick up window was between 8 and 2:30). I was at a meeting in San Francisco and had to call the Project Baseline hotline to explain what had happened and no, I wasn’t home to unpack and refreeze to pack it up the next day (and I was unwilling to do so). I told the gal that if it wasn’t picked up that night, it was going into the garbage and I wasn’t going to provide another sample. She understood and said she would notify the study site.
It didn’t get picked up. So no poopsicle sample for me for this year. What a cluster-f$&*. 13 months later and Project Baseline still doesn’t have its shit together.
On a positive note, I did get lab results back from Project Baseline very quickly and took a glance at the results from the previous year to see the changes. I absolutely believe in establishing our own, personal baselines and then tracking changes over time…this is powerful stuff. I’ll be reviewing them with my primary care physician next week.
Because we weren’t told to fast, a lot of the results either aren’t relevant or can’t be compared to published acceptable ranges. This seems like a simple thing to correct and an oversight on the part of the study structure. Although I do know that providing data results to study patients is an unusual thing and one that Verily grappled with last year. I am glad they ultimately came to a positive resolution on this. Since the testing is being done the same way, I can still follow the trends. I just need to talk to my doctor about what the trends mean.
As for the data collection over the year, you may recall that I complained about the Google Study Watch being the size of a watch and that I look like a dork wearing my Apple watch (that gives me value) and the Study Watch (that only gives me the time). I was having issues with the watch…wasn’t holding a charge…and the the watch band had gotten kind of nasty. I asked for a new band at the visit and while we all forgot, my friend Donna delivered one to my door a week later.
I stopped wearing the Study Watch for about 4 months just to see if anyone from Project Baseline was paying attention and making sure my data was being collected. No one did. When my Apple watch broke in Europe in July, I started wearing the Study Watch again. I am now back to looking like a dork since I got the new Apple watch (and am loving the additional health data that is available to me from it).
Is Project Baseline getting my sleep data? I have no idea. There is no dashboard for me to monitor to make sure that it is being collected and sent. I don’t need to see that data but I think it would be helpful to Project Baseline if I could monitor that it is being captured and sent. Apparently they don’t care. Well, if they don’t care, I am not going to worry about it.
They did start providing step data but it’s wildly inaccurate. There was one day when my phone tracker showed about 9,000 steps and the Study Watch app showed 19,000. The next day showed over 13,000 steps and I know I wasn’t even close to that.
And if you are wondering if I gave anyone feedback based on my experience (especially since I have about 20 years of experience in life sciences and am an active investor in digital health) the answer is yes. Several times. I even offered to provide additional help and guidance. I met with a marketing person at Stanford at the end of my annual study visit and shared my experience and thoughts yet again. I was asked if they could contact me for more information and I said I would be happy to oblige. No one has contacted me.
I am passionately interested in leveraging data and technology to flip healthcare on its head. I am passionate about gathering data and providing tools to change behavior to improve personal health. I am so passionate, I am putting my body up for testing and research (Project Baseline, AllofUs, 23andMe, Color, Baze, Viome, TruMe, etc.) and beta testing various solutions to this end. And I just ordered the new offering from Color for hereditary heart health and medication response. I used my Ancestry results to complete my background info for the new Color order.
I often comment (negatively) on the arrogance of each of the players in the healthcare system (or those trying to get into healthcare) and how if they all just dialed it down a few notches, we might be able to come together to really make a difference. By listening to the others, we might have a chance of really changing the healthcare landscape and improving quality of life.
Project Baseline is a perfect example of Big Tech (Google / Verily) coming into healthcare thinking that everyone else is doing it wrong and that they have all of the answers. And thinking it’s so simple. They don’t and it’s not.
I put in more sophisticated systems in biotech companies 20 years ago than what Verily is using for the health data intake and I think this is going to be problematic for data analysis later on.
To ignore the fact that a lot of us use smart watches and not create a FitBit like device instead of the Study Watch, is ridiculous.
To not monitor that patient data is coming in and following up when it isn’t, violates basic tenets of clinical trial management. There are clinical trial management systems available to help with this type of thing and have been for years.
Last I heard, there are 1000 patients enrolled at Stanford and 1000 at Duke. I am not sure about the other site. That’s not a lot of patients given the size of other clinical trials run by biotech and pharma companies on a regular basis. This shouldn’t be that difficult. Getting people to enroll is often challenging for clinical trials but the clinical trial management shouldn’t be such a challenge.
You might sense some angst in this post and I would give you a gold star for noticing it. Why am I so upset? Because our healthcare system does need to be disrupted and I hate to see waste and inefficiency. I was totally bought into what Verily was doing with Project Baseline and had such high hopes. But my hopes have been dashed and now I just see it as a waste of time and money. I feel let down.
Their arrogance is getting in the way of potentially disrupting healthcare and that makes me sad.
