Gas station without pumps

2019 January 20

Project Baseline claims (falsely) to prioritize sharing info with participants

Filed under: Uncategorized — gasstationwithoutpumps @ 11:56
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In Blog – Project Baseline: A new era of health data: The vision and challenges of returning individual research results, the Project Baseline staff claim

At Project Baseline, we decided that we will prioritize the exploration of providing health information back to participants. We are well aware of the challenges linked to returning results but, in support of our philosophy that we want to take a patient-centric approach to clinical research, we are continuing to work through them.

Unfortunately, they are still not doing a very good job of sharing.

Some things they do well—for example, after the first visit they sent me the lab report on all the blood and urinalysis lab tests (which had no interesting results—the only anomalies were in the lipid test panel, which was flawed because it was not done fasting, and I already have lipid panels done annually).

Other things that they could provide trivially (like being able to download from the web portal the pulse-rate records that the watch collects) they do not provide at all.

Worst, though, is their practice of sharing only bad news.  For example, my December visit included a stress EKG and stress echocardiogram test, and some anomalies were found in the stress EKG.  Because stress EKG has a fairly high false positive rate, the usual followup is to do a stress echocardiogram, to see whether there is any cause for concern.  Their practice of sharing only bad news meant that they gave me the stress EKG results, but not the stress echocardiogram results (which they told me on the phone showed that the stress EKG is a false positive, but no written or e-mailed message said that).  I’m not even going to bother sharing the stress EKG results with my family physician, even though the letter they sent with the report says “We recommend that you contact your healthcare provider about these results”, because she will have no access to the stress echocardiogram that shows it to be a false positive and would be required to order a repeat of the test.

In a way, I’m glad that the stress EKG came up with the anomalies, because that meant that they let me have a copy of the 50-page EKG results, which they otherwise would not have.  I can show some of the EKG traces to my class, when they are making their own one-channel EKG amplifiers.

Also, the report confirmed my suspicion that we had not gotten anywhere near maximum effort on the stress test—my heart rate was still stepping up linearly with effort at the point the cardiologist ended the test, showing no signs of having plateaued. The cardiologist had convinced me to stop at only 6.8 METs (metabolic equivalents), while I routinely run an 8-minute mile, which is supposedly 11.8 METs [].

If they do a stress echocardiogram at next year’s visit, I’m going ask that the cardiologist not stop me before 13 METs, 190bpm, or 220 mmHg systolic pressure, unless I first cry “hold, enough!”  I’d like to know what my max heart rate really is.  (If Project Baseline let me have access to my pulse-rate logs, I could see what my pulse rate gets up to on my daily bike commute or my jogging, which would at least give me a lower bound on my max heart rate.)

Update 2019 Jan 20:  I forgot to mention that some reports (it isn’t clear which) are available, according to an email message they sent:

Visit the Project Baseline mobile app to see your reports!

Please note that these are only available in the mobile app, not the web portal.

Unfortunately, because I don’t have a cellphone (much less a smartphone), I can’t see what is included in these reports.  I’m fairly certain that they don’t allow downloading the day’s or week’s record from the pulse monitor, though.

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