Hi there! I am a master student at TUDelft current working on my thesis. Besides being part of the Quantified Heart study team I am aiming to develop a future vision for integrating self-tracked data into a collaborative care workflow. Therefore I would like to hear from you:
1) Have you ever tried taking your data to a doctor?
a) If so, why? How did it go?
b) If not, why?
2) What do you expect from a doctor if you take your data to him/her?
Thanks! Any experience you can share is highly valuable for me
I’ve taken my blood pressure and heart rate readings to a walk-in clinic twice in the past. We’ve also taken our toddler’s spO2, heart rate, breaths per minute and medication data to his asthma clinic doctor and to the local emergency.
Answers for me:
1 a) I took my heart rate/blood pressure readings with me to the walk-in clinic after experiencing an unusual spike in blood pressure as a way of convincing a doctor whom I hadn’t seen before that I was not a hypochondriac/wacky (my doctor was on vacation). He only glanced at the data and noted the spike but basically dismissed it and focused on my current vitals and his questioning.
Part of me expected them to dismiss the data. Though I hoped them to review it and ask related questions, even if it was to ascertain the accuracy of the data, such as, "what device were you using? How did you feel when your blood pressure was spiking?
Answers for my son:
Emergency visit:
1a) They glanced at it long enough to note that his stats had changed recently. Then they focused on his current vitals which weren’t good, paged a respiratory specialist and they ordered an x-ray… early stage pneumonia once, bronchial issues the second time. (Background… we’ve observed when his sleeping heart rate is accelerated and his sleeping spO2 drops below 92 or so for extended periods that he’s going to need an intervention. )
If we go to Emergency, we understand that they are going to assess and deal with what they observe/measure at that time. That’s their job. We’ve been through this process with Turner enough times to know that. We show them the data to try to quickly convince them that we’re not paranoid or wasting their time. Then we let them do their job.
Pre-scheduled Asthma specialist visit:
1a) I took the data in to show that we were diligent about his meds and that we monitored how he was doing on a daily basis. This is a Specialist and we only get a 20 minute appointment every 3 months with her. I expected a specialist to care more about specific and consistent data than a general practitioner or a random emergency/walk-in physician/nurse.
The asthma clinic doctor for my child did not look at the months-long data we kept ( “regular” stats were summarized, “spikes and illnesses” were highlighted.) Instead, she just focused on “standard” questions. The questions were general… “How has he been doing?” “Have you been giving him the preventative puffer on a regular basis?” “How often have you given him the intervention puffer?” etc. Well, all the answers to her questions were right there in the data but the doctor didn’t bother to look…I assume they were tight on time and used to dealing with families who didn’t record data.
It’s my son’s breathing! He had pneumonia once since they saw him last and was prescribed antibiotics twice! You dedicated extra years of your life to be a jedi at this stuff and you’re acting like I’ve brought my used Buick in for a tune-up! WTF? At least analyse the data being given to you to decide if you can use it to make my kid’s childhood better.
Also… my regular doctor… I don’t see him often and when I do, I just summarize the differences in my personal health indicators since last time we visited.
He looks at the data, enters notes into his record-keeping and then he asks me all the general questions . In the recent past, he’s ordered an ecg/ekg based on irregularities - more for my concern than his… and they turned out “normal”, as he expected.
I don’t expect a doctor to have time to pour over my data. However, I can use my data to prepare for a visit, so instead of saying “I don’t feel like I’ve slept as well recently”, I can be very specific. This is especially important when seeing a doctor who doesn’t know you well.
