BEAT Parkinson – in English

2015-11-21 10.01.35-2On a weekend in November 2015, Stockholm was the scene for the start of a novel (for Sweden) concept for training for Parkinson’s: boxing training! The boxing club Narva had taken the initiative together with the Parkinson’s association of Stockholm and me to invite the Portuguese physical therapist Josefa Domingos to offer the boxers at Narva boxing club education in Parkinson’s disease and also offer trial sessions of boxing training to the members of Parkinson Stockholm. It was a huge success, see the film below.

We are now looking for ways to offer regular training sessions specialising in Parkinson through sponsorships or other means. If you have ideas or suggestions, please email me at contact@riggare.se.

Organising your own “health management system”

Personal View published in BMJ (http://www.bmj.com/content/351/bmj.h6318): “Patients organise and train doctors to provide better care” by Sara Riggare and Kenton Unruh.

During the last few years, I have been thinking a lot about healthcare, which could be seen as strange, since I actually don’t use a lot of healthcare. If you’ve ever seen me present at a conference or watched a video of me, you have probably seen my “picture-with-all-the-dots”, so you know that I see my neurologist only one hour per year. And I am actually quite a healthy person, apart from the fact that I have an incurable progressive neurological disease, so I don’t go to other physicians a lot either. All in all, on an average year, I probably spend 2-3 hours in a doctor’s or nurse’s office for my own health.

So why am I spending so much time thinking about healthcare, what the current problems are and how to make it better? Well, the main reason is probably that I want to improve the system for my own sake, so that when I need more help, the right help is available. But I am also doing what I do because I believe that I have a responsibility to contribute in the best way I can to making the world a better place and it seems that this is an area where my efforts seem to have a good effect.

My work these last few years has given me the pleasure of meeting a lot of fantastic people, people who, like me, are living with substantial health challenges. And I have realised that all of us have one thing in common: instead of adhering to “the system’s” idea of the best way to organise healthcare for our particular disease or condition, we have all taken things into our own hands and organise our own “health management  system”. This often include aspects that is not always considered part of the healthcare system.

The organisation of what you need to manage your health in the best way is also the theme of a recent Personal View that was published in the British Medical Journal, written by Kenton Unruh and myself. In the article we describe the work we both do to make sure we get the care we need for our Parkinson’s disease. The main points of the article are:

  • Assemble the best team – we have both identified and assembled the clinical expertise we need to ensure access to the support we need in managing our complex needs.
  • Manage information efficiently – we gather information prior to visits using a single page colour-coded summary of current medication regimen, clinical status and questions and/or a prototype of a smartphone app.
  • Evidence or opinion? – to ensure optimal decision making, we ask our clinicians to indicate if the information they provide is based on scientific evidence or general clinical practise.
  • Coordination between visits – we acknowledge that we have the biggest interest and the best possibility to be in possession of the full picture of our health and therefore take it upon ourselves to be the carrier of information between visits and clinicians.

We are aware that we are taking on tasks that could be considered to be the work of the healthcare system. However, we find that our approach enables us to optimise the outcomes of our healthcare interactions and also to use our own time more efficiently.

Let’s help ourselves by working together to improve healthcare systems: patients, clinicians and healthcare organisations!

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 (http://www.economist.com/node/21548493)

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”.

Not patient but im-patient