The final topic for the Patient Engagement Design course I’ve been taking is the quantified self. I kind of wish this topic came up a lot sooner in the course. The activity that is suggested is one that I already do (tracking some aspect of my life), but could have had more impact if it were suggested sooner – such that people could share their experiences a few weeks later.
The idea of quantified self is one that I was already quite familiar with. When I was first diagnosed with cancer, I blogged about my quantified self as well as my qualified self. In looking at my quantified self, I have quantitative data for:
- The exercise that I did throughout chemo (mostly tracked in RunKeeper)
- My weight (Withings scale which reports into RunKeeper)
- The side effects I experienced (I filled in a daily Google spreadsheet of my side effects)
- The pills I took (I used the Dosecast app to track all the meds I took)
- My sleep analysis using Beddit
- The pre-treatment blood tests (CBC with diff and comprehensive metabolic panel)
- Pre-chemo and post-chemo MRI & Mammogram
- Pre-chemo pathology reports
So, I have a good picture of my quantified self both before my cancer diagnosis and throughout chemotherapy. In addition, I have qualitative data in the form of my narratives in my cancer blog: http://bcbecky.com.
In the presentation by Ernesto Ramirez about quantified self, he says they ask three questions: What did you do, How did you do it, and What did you learn? The first two questions are answered in the list above – I tracked a whole bunch of stuff as I went through chemotherapy.
The challenge I have now is that I have a lot of data – what is to be done with it? What did I learn from this process? Sometimes just collecting the data itself acts as motivation for positive behaviour. For example, by tracking how much I walk, I can set goals to walk a little further each day. Since I’m now officially recovering from chemotherapy, I can expect to be able to start rebuilding my strength.
The data around side effects was useful when I was seeing my oncologist on a regular basis as I progressed through 17-weeks of chemotherapy. Regularly, I review the side effect spreadsheet data with my oncologist. This was especially useful because my ability to remember the side effects after the fact was limited.
Chris Hogg highlights an important gap in self tracking and healthcare – “The people most in need of health solutions are the least likely to go seeking them…This is a strong inverse relationship.” I think this is a really important point. In patient engagement, more could be done to make self-tracking (and analysis) easier and more appealing to those who need it – rather than those who ask for it.
One focus on self-tracking and wearable technology has been on making the tracking process invisible – the idea is, the data is just tracked. The person may or may not choose to look at the data on a regular basis, but it is still being tracked and saved. This was the case for me and the scale. I’ve been using the same scale for years – so I had years worth of weight data. I could look back and see that two weeks before I felt the mass in my breast I started to loose weight. Prior to that, my weight has been very constant (with the occasional addition of a pound here and there). My diet had not changed and my exercise levels were pretty constant – but I was loosing weight. I wasn’t worried about losing weight, although the pace of the loss was starting to be a concern – I had lost 10 lbs in 2 weeks. Then I felt a mass … Had I not had the scale that saved my daily weight automatically, I would not have been able to see that trend. I cannot know for certain when the cancer started to grow, but the data on my sudden weight loss might be a good indicator. I like to think so.
As with any big data, I think there is a lot that could be done with data. My husband keeps threatening to actually do some analysis – seeing if there is any correlation between side effects, exercise, medications, and sleep. It would be quite interesting to see if the what I think is the case (I sleep better if I get exercise) is actually the case. For now, I’ll just keep on collecting data.