I have called myself a self-tracker since the first time I heard the word. The concept of using technology to collect data about myself and then analysing that data to better understand different aspects of myself and my surroundings has always resonated strongly with me, both as an engineer and as a researcher.
My self-tracking practises have been very useful for exploring how to best manage my Parkinson’s medication and also for other aspects of this challenging disease.
But I don’t track every day. I do however collect data almost every day, mainly relating to my physical activity (steps) and sleep. I don’t consider that tracking though. I consider self-tracking to be a process, and I often use the PDSA-cycle (plan, do, study, act) to explain it, and if not all the steps are addressed, it is not self-tracking.
For self-tracking, I specify the steps as goal-setting, data collection and analysis, reflection, and decision-making and, in my opinion, it is essential that we interact with our data, put our data into a context and reflect on what it means. That is when the magic happens!
When I first learnt about the Quantified Self movement and presented at the first QSEU conference in Amsterdam in November 2011, I thought it was all about the technology, about the gadgets. With time, I have realised that it is not, technology is important, but as a tool, not as the goal itself.
The goal is to use your own data to answer your own questions.
The collection of data can be facilitated by the use of technology but it is not necessary.
In 2011, I was very optimistic, we probably all were: the emerging technologies would be able to help us better manage our diseases in ways we couldn’t even begin to imagine. I still think we have a lot to gain from using more technology in chronic disease management, but I am significantly less optimistic.
Self-tracking is really hard!
Firstly, it is very difficult to ask the right questions, like: What do I want to achieve? How can I even measure that? What kind of data do I need? How can I collect it? And how to analyse? and last but not least: What on earth do these results mean? Different questions and approaches are likely to require very different tools, knowledge and skills.
Secondly, it is very, very difficult to design and develop tools for self-tracking that are accurate enough to give correct and valid results but at the same time versatile enough to enable the users to explore their own questions, and not only the ones that healthcare or the device manufacturers thought were the relevant and important ones.
And, finally, self-tracking takes time. A lot of time. And if you are already spending a significant amount of your time on managing different aspects of your disease, maybe you just don’t want to add more chores. In my case for example, I take six different prescription medications, five times per day, in three different combinations, with four different time intervals. These pills need to be organised, distributed, restocked etc and this takes time. In order to stay as well as I can for as long as I can, I also need to make sure I get enough exercise, which of course also takes time. To add more tasks, like self-tracking, would mean less time with my family.
Self-tracking has to be worth the effort. And to me, most of the time, it is not. I track when I have a good reason, for example when I want to find the best timings for a new medication dose or if I want to investigate a suspected new symptom.
You’ve probably heard the expression: “burden of disease”, frequently used in Public Health as a measure of the impact of health problems, to for example a country or a region. Carl R May, Victor Montori and Frances Mair have proposed the expression “burden of treatment” as a measure of the work we patients have to do to care for ourselves, for example managing treatments and doctor’s visits, lifestyle changes etc.
When discussing the future of healthcare, it is very often predicted that patients will collect a lot of data on their own devices. But will we? Will the effort of tracking pay off in the form of actual health improvements?
I would like to suggest that we start talking about
“the burden of tracking”.