All posts by SaraRiggare

The Burden of Tracking

"The quantified self Counting every moment" - The Economist
Image copied from the article “The quantified self Counting every moment”, published in The Economist March 3rd 2012 (

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”.


images-5Most people would probably agree that being diagnosed with Parkinson’s disease (PD) at age 32 would be a hard blow.

It was.

I usually describe it as “it felt like I fell down into a black hole”. Stephen Hawking would probably have a lot to say about my complete disregard for the laws and theories that govern space and black holes but what does he know about hard blows anyway… oh, right, he probably knows enough…

Anyway, I digress… I did get a really hard kick from life on that day in June of 2003, when a neurologist told me that I have PD.

Earlier that same year, life brought me something else. The most beautiful baby ever born. My husband’s colleague said: “She looks very much like her father but she’s still very cute”.

This means that at the time for my diagnosis, Frida was four months old. It also means that black hole or not, I couldn’t stay there. I had something more important to do than feeling sorry for myself. Slowly, very slowly (Parkies are very rarely anything but slow, unless there’s chocolate to be had…), I crawled back up into the light and started rebuilding myself and my new perspective on life.

It was not easy. It still isn’t.

Every day I fight PD and the increasing number of symptoms it brings me. If I would only get out of bed on the days I feel well, you wouldn’t see me many days of the month. But you know what? There are billions of people struggling on this planet, we all struggle. Sure, there are plenty of days when I think that I deserve an Olympic gold medal in stubbornness, and that’s only for getting to work.

I would never have wished for having PD, but it has brought me so many good things where the most important is all my wonderful friends all over the world, both fellow parkies and others.

PD is tough, really tough. Every day I fight, together with millions of fellow parkies all over the world. We fight increasing disability in the form of slowness, pain, sleeplessness, bruises from falling and much more.

Malcolm Gladwell writes that you have to spend approximately 10,000 hours to become an expert in something. I have spend much more than that to actively fight PD and I am proud of what I have achieved. I am definitely not saying that I am better than anyone else at battling PD but I am definitely an expert at fighting my PD. I am proud to be a “super patient”.

But this doesn’t make me special. I am only doing what I think I need to do to make the best of the hand I am dealt.

No one ever said life is fair.

Going from researching patients to patients researchers

MedX15In September I will be attending one of my favourite conferences for the third time: Stanford Medicine X! It is the most patient-inclusive conference I have ever come across and always full of people generously sharing their stories relating to medicine and health.

This year I will participate in a panel discussion titled “Going from researching patients to patients researchers” together with the wonderful Susannah Fox, the inspiring entrepreneur/patient Michael Seres and the amazing Eli Pollard. In the panel, we want to discuss how patients’ opinions, knowledge, and experiences can make the whole research process better; from formulating the research questions, to designing, recruiting, and implementing the research as well as disseminating the research results.

We also want to discuss how patients who manage our diseases every day are actually testing hypothesis more or less consciously. Can the knowledge arising from that be captured and disseminated in a structured way?

To start us off in preparing for the panel discussion this September, we want to hear from you! Could you tell us about your experiences?

What do you (or your loved one) do to manage your disease/condition/health challenge other than what you are told by healthcare to do?

Please comment below!