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”.
Great post on an important topic, Sara!
I think about the burden of tracking a lot. I’m a way better self tracker when my numbers are good. It’s hard, emotionally grating and possibly more detrimental to my psyche than helpful when my numbers are bad and trending down despite my best efforts. Sometimes when I know they’re bad and it feels like nothing I can do will reverse the trend, deliberate ignorance does truly feel like bliss. I just don’t even want to see them and then I get upset with myself for being cowardly.
Self tracking, disease management, behavior change — so much of it is about perceived agency, I think.
In the face of progression, can self tracking become more harmful than helpful? How can you protect your psyche without totally throwing your hands up in the air with self tracking?
Thank you Emily! You make a very important point about tracking when you know you’re bad: what is it really good for? And you write so poetically! May I quote you on: “Sometimes {…} deliberate ignorance does truly feel like bliss.”? Beautifully put!
This is very well-said. I like how you have definable tracking goals for yourself, but also realize the burnout/data overload elements. I experience all of this with my type 1 diabetes tracking, so I have decided to cut myself some slack: Upload and analyze data when I’m in the mood to do so (instead of doing it too often and burning out faster), and go into it with a certain goal of analyzing trends to tweak my management for the better. Tech and tracking are great tools in healthcare, but sometimes I worry that we spend so much time surviving that we forget how to live in the moment.
P.S. Emily raises a great point. I must admit that I am much more into tracking when things are going well. When the going gets tough, tracking becomes an additional way to unfairly blame myself. Diabetes is the jerk- not me. But sometimes tracking leaves out that pertinent detail.
Ally, thank you for commenting! You probably have far more experience in tracking than I do, since there really are very few “trackable” aspects to Parkinson. Great points on “periodic tracking”! And tracking should not be a blame-game but it so easily is…
This is a long overdue article. I have held similar views for a while, that monitoring is becoming an end in itself and that, at worst, it’s going to be sufficiently onerous that it may even influence the very data it is trying to measure. Self-monitoring runs the risk of being a burden. And when it becomes a burden, it ceases to be appropriate to monitor.
Thank you Jon, I agree, self-monitoring is not worth it if it doesn’t give more than it takes.
Self monitoring will only ever be done manually by strange obsessive data geeks like ourselves in my opinion. As a youngish person with PD I aa able to use smart devices and analyse data from them. I can correlate models and look for effects. I don’t imagine very many elderly PD people will have much ability to self track. So I think manual conscious self tracking is only a discovery process. By working out what we can track and what is a waste of time we can develop a tool that can automate tracking to the masses.
Ron, you are so right, we both are “strange obsessive data geeks”!!!!!
Thanks so much for this, Sara – and also to Emily for the important reminder that self-tracking when those numbers are good is a different animal compared to tracking when they are “bad”. Even the “bad/good” judgements inherent in all self-tracking activities simply cannot be good for our psyches unless we are among the worried well.
I’ve written about this subject frequently over the years, all with the same concluding question about my own self-tracking efforts: “What – if anything – am I going to DO with all of these numbers?” The answer to that question is important.
Devoted Quantified Selfers tell us that self-tracking can help to motivate us. But as I once wrote: “I don’t need motivating. I need to not feel sick.” More at: http://ethicalnag.org/2014/09/03/self-tracking/
I love your concept of “the burden of tracking”! Best of luck to you…
regards,
C.
Carolyn, thank you for your thoughtful comments and support!