My 5 top learnings from tracking my Parkinson for over a decade

I have more than a decade of experience from tracking my Parkinson’s disease (PD) and I want to share my 5 most important learnings. Hopefully this can contribute to the increasing interest in tracking for PD by adding a bit of nuance to the, often very data- /research- /doctor-centric discussions. Do let me know what you think by commenting on this post!

As you probably know, PD is a very complex and incurable condition. Because of the extreme variability in symptoms and treatment needs, it is generally seen as one of the most challenging diseases to manage optimally. In general, the basis for managing PD is pharmaceutical treatments, most often in the form of pills. These pills help in different ways but the longer you’ve had the disease it gets more and more difficult to get the pills to give the optimal effect.

I had my first symptoms of PD over 35 years ago when I was in my early teens. Currently I take 4 different types of medications for my PD. I take them in total 6 times every day, in 4 different combinations and without them, I wouldn’t be able to function properly. If I didn’t have these pills I wouldn’t be able to move around safely, I would probably not be able to feed or dress myself and most likely not be able to work. (Before levodopa-based medications became generally available for persons with PD in the 1960s, PD was a fatal illness). So I am very grateful to have access to my medications. And even though my neurologist is an expert in the theoretical aspects of PD, he has the learned expertise, he doesn’t know what it’s like to live with PD 24/7/365. To be able to live as good a life as possible with this complex disease, I also need to do my part to answer questions like:

• What is my best combination of treatments and other activities?
• In which doses?
• At what time intervals?

Tracking (related concepts meaning more or less the same include for example: self-tracking, Quantified Self, self-quantification, and, to some degree, citizen science) can be one way to find answers to those questions. I have been tracking my PD for more than a decade and I now want to share my most important learnings, starting with:

It took me a while to realise just how vastly different the perspectives of different stakeholders can be. For the sake of this discussion on tracking, the main stakeholders are: healthcare professionals, tech companies, pharma companies, academic researchers, and, of course, we who are living with conditions/diseases (aka patients). Below, I discuss each of those categories separately and some of the comments are specific to PD and others are more general.

Among healthcare professionals I have mainly encountered two perspectives:

1: “Yes, let’s get our patients to track everything
we can think of: heart rate, blood pressure, weight,
medication, self-reported outcome measures,
diet, activity levels etc”

and:

2: “I don’t like it when patients bring
their own tracking results and want
to discuss during our meeting. It takes
a lot of time and the whole meeting is wasted!”

(NB: the main difference between these two
options lies in who initiates the tracking.)

The main interest from tech or pharma companies is often to use patients’ data from tracking to build their business. Of course, there is value for patients and healthcare in what the companies provide, but if they don’t make a profit, the companies will not survive.

Similarly, academic researchers want to collect and use patients’ data, albeit often in a slightly different way. In academia, the “currency” is published articles, preferably in high impact scientific journals. High impact scientific journals often have a conservative view of research and the patient role, which means that to get published there, academic researchers benefit from also being conservative, see an example here: “But Sara…”

As patients, we often also have multiple perspectives on tracking:

“if I track what my physician wants me to track,
I will surely get better, after all, he/she is the expert.”

“if I track what this company wants me to track,
I will help develop a service/app/treatment that
will improve my life”

“If I track what this researcher wants
me to track, I might get cured!”

“But wait a minute… I don’t get anything back
from all the data they get from me…
Is this really the way it’s meant to be???”

In different projects, several of these perspectives are often represented and there is often a bit of a “tug-of-war” early in the project to decide which stakeholder’s perspective will take priority in the project. I have participated in many projects over the years where tracking of some sort has been a key feature. The projects have been funded by for example the EU, by different companies/organisations (tech/pharma/non-profit), by different research funders, by healthcare providers and even by different governmental entities. To date, in exactly zero of all the project, has first priority been given to the patient perspective… When the application is written it’s all: “The patients are our MOST important stakeholder”, “patient-centered this” and “precision-medicine that”. Strangely enough, once the funding is given, a scope-creep occurs and when the project is approaching the end, the excuses start being heard: “The funding wasn’t sufficient to also provide the participants with their own data”, “we ran out of time to be able to give personalised feedback to the patients who provided their data”, “if you just help us by also joining our next project, we will use the learnings from the previous one (where we failed to deliver on our commitment to patients)”, and, my personal favourite: “we need to do more research first”.

I don’t know about you but I certainly would love to see a change happen here.

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On to the next learning:

If you want to live as good a life as possible with PD, you really have to put in a lot of work. Of course, the same goes also for many other chronic and long-term conditions and diseases. To then also track this, that, and the other adds to that work.

People often think that I track all the time. I don’t. Instead I track when I have a reason for tracking, for example if I have a feeling that my medications may need tweaking or I think that I may have a new symptom. And even then I track only for a limited time, for 5-7 days or so. This is because tracking takes time and energy, time and energy that I can use on better things than non-focused tracking. If I am doing well enough, I don’t want to waste my time tracking, I want to get on with my life. When I track my Parkinson’s, I do it only for a few days in a row, I make notes of when I take my medications, and I assess my general functioning both before and after I take my medications as well as a few more times during the day.

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Many, if not most people see tracking as inextricably linked with technology of different kinds: sensors, devices, smartwatches, apps etc. And I have tried it all: I have tracked my numbers of steps using many different brands of pedometers, I have measured my blood pressure several times a day with more or less mobile devices, I have worn a bracelet that told me my HRV (heart rate variability), I have had accelerometers strapped to my ankles and wrists to capture my movement patterns, I have worn a headband that measured my brainwaves during sleep, and I have tried more apps than I want to remember. However, the tools I use these days when I need to track my PD are:

• A Google form for making an entry when I take my meds and also for notes on symptoms and other observations. Sometimes I scribble a note on paper instead.
• Excel to make graphs.

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People also often think that I have collected a lot of data about myself and that I share those data with other self-trackers, with healthcare, and with researchers. This is a misconception that we in the Quantified Self community hear often. Contrary to common belief, self-trackers do not often share data with one another. Instead we learn from what others do: how they think about their personal questions, which tools (digital or not) they use, and what their reasoning process looks like. We don’t share data, we share methods.

Personal science is a framework for using your own data and observations to find answers to your own questions. Personal science is a methodology to support the individual learning that can be made from tracking. The important thing to remember is that the tracking in itself is just the collection of data (“observing” in the image). The personal science cycle also includes reasoning with those data as well as making individually consequential discoveries.

In public discussions on tracking, mentions of AI and Big Data are rarely far away. Those affordances can be useful for analysing tracking data intended to be used in conventional clinical research, see box below, but at the current time not for data from personal science.

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And, finally, my number one most important learning from more than a decade of tracking my PD:

My most important learning is to make sure that my tracking is based on my own questions (“questioning” in the image of the personal science cycle above). For my neurologist, my Parkinson’s is probably only top of mind during that one hour per year or maybe a bit longer. And that is entirely understandable, I know that there are many more patients than me that need help. For me the situation is different, my Parkinson’s is at the top of my mind every hour of every year, whether I want it to or not. My focus therefore has to be on on what is important to me. This is surprisingly difficult for a lot of reasons.

The main reason that it can be difficult to ask your own questions is that we are not used to thinking in that way, often we try to make our self-research generalisable for other as well. It’s as if we’re all trained into not being allowed to help only ourselves. I have really struggled with this myself, thinking that if I focus on something that helped only me, surely that can’t be of much interest to others. But it is, because in personal science, it’s the methods that are generalisable, not the results.

I would like to encourage everybody interested in tracking and personal science to focus their tracking on actionable insights. And remember that context is key. Let me end by giving an example:

My question could for instance be:

How can I best time my medication intakes?

I know that my physical functioning varies over the day as the concentrations of the pills I take slowly increase after I have taken them and decrease as the active substances leave my system. I also know that if I take my pills too early compared to the previous one, I will get troublesome side effects.

All these factors are included in the context
and are necessary to be able to correctly
interpret my observations

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I genuinely hope that in the future we will be able to join forces and unify several of the perspectives from my learning no 5. The world will be a better place if we learn to work together!