I owe a lot to research. Thanks to an immense number of dedicated researchers, I have access to reasonably effective treatments for my Parkinson with (so far) manageable side effects. And of course we need more research, in all diseases and on all levels of health and healthcare.
But, is the current process for how research is being undertaken ideal to achieve the best results? I think improvements are urgently needed and here’s why:
I don’t doubt for a second that researchers are dedicating all that time for all the right reasons: they want to help people and improve health and healthcare. But what does the system look like? Well, if you’re a researcher, or even just a doctoral student like me, you know very well that your work is rated to a large extent based on publications. And of course, that would be all good and well, assuming that scientific journals make sure that they assess that submitted articles address research important to patients. To my knowledge, to date, only the British Medical Journal actively asks researchers to what extent patient input has influenced the research reported in the submitted article (as described in this article about their strategy for patient partnership).
I was very happy to read about the Australian government’s proposed changes to the process of research funding earlier this year (link here), where they suggest more emphasis on “engagement” and “impact” over publications. As far as I know, the details of the proposed changes are not clear yet, but I am carefully optimistic.
Most research being done to date, is primarily done for the sake of research, secondarily for the sake of healthcare, and thirdly, if at all, for the sake of individual patients. This is a result of the very complex weave that makes up the current research process. And I am not saying that good or even great research cannot come from the current research process. I am however convinced that we would all benefit from a complementary research paradigm, taking the individual patient as its starting point.
Research being done for the sake of research may be good, but it’s not enough!
On 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 firstname.lastname@example.org.
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.
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!
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.
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!
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
Most people would probably agree that being diagnosed with Parkinson’s disease (PD) at age 32 would be a hard blow.
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.
In 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?
For the last year or so I’ve been working in a project funded by the Swedish government’s national strategy to treat and prevent chronic diseases. We call the project “Dagens patient” (“Patient daily” in English) and you can read about it here. “Dagens patient” is based on my work around self-monitoring my Parkinson’s and we currently work with people with Parkinson’s and MS, exploring different aspects of self-monitoring together. One member of our Parkinson’s group has done some really interesting things and she talks about it in the video below. It is in Swedish but has English subtitles. Let me know what you think about it!
Tomorrow on 2nd of June, I will be sharing my experiences with Parkinson’s with Gilles Frydman of Smart Patients and on Twitter so you can follow me if you like. I described this project in a post yesterday and I will start at 6 am my time, which is Central European Time, when I take my first dose of medications for the day. Throughout the day, I will share my experiences, feelings, thoughts etc relating to Parkinson’s as much as I have time for or my fingers allow. I have no idea where this will take me, but I am sure I will learn a lot!
If you want to know how it goes, follow #Parkinsons1day on Twitter tomorrow on 2nd June 2015!
#Parkinsons1day is a project initiated by Roni Zeiger and Gilles Frydman of Smart Patients, an online community where patients and caregivers learn from each other about treatments, clinical trials, the latest science, and how it all fits into the context of their experience. The community started in cancer but is now also moving into other diseases and conditions.
In april 2015, a few persons affected by Cystic Fibrosis (CF) were matched with people who wanted to learn about CF with the support of Smart Patients. The experiences were shared on social media and described in this post on Smart Patients.
And now, yes you guessed it, it’s time for Parkinson’s! I will be sharing my experiences of living with Parkinson’s during one day next week with Gilles Frydman and on social media. Follow the hashtag #Parkinsons1day on Twitter for more information!
Parkinson’s is a neurodegenerative disease, meaning that it gets worse as time goes by and there is no cure. If you think about it, life itself shares those characteristics, but there is one important difference. For us having Parkinson’s, the downhill slope is much steeper than for people without a neurodegenerative disease for company.
The good thing is: there is plenty we can do to help ourselves! If you have read my blog before, you might remember my visit to the neurorehabilitation centre in Portugal and how much benefit I found from exercise. Unfortunately I find it very difficult to maintain my exercise regimen at home, and one of the main reasons is that I have been struggling to find a physiotherapist within a reasonable geographic area who knows enough about Parkinson’s to be able to help me come to grips with my biggest issue, which is “freezing-of-gait”. I will keep looking and any tips, suggestions and ideas are more than welcome!
I am currently reading a very interesting book that supports my belief in exercise as a very potent complementary treatment for Parkinson’s and many other neurological problems. The book is written by Norman Doidge and is titled “The Brain’s Way of Healing” and was recommended to me by a friend with a complex neurological condition that the medical world have failed to address, leaving my friend to help himself as best he can (which he does quite successfully).
My “Parkie” friends will be interested to know that “The Brain’s Way of Healing” has an entire chapter dedicated to Parkinson’s, where the author in commendable detail gives an account of the experiences of John Pepper. John Pepper is in no way uncontroversial in the Parkinson’s world, being known for his website “Reverse Parkinson’s” and his book with the same name. Without commenting on whether or not John Pepper’s methods are scientifically sound and sufficiently stringent, I can only say that what I read in Doidge’s book really resonated with me and supports my own conviction that my medical treatment for alleviating my Parkinson’s symptoms can be significantly enhanced by the use of exercise.
To me, this is a great consolation on days when Parkinson’s really gets to me and everything feels black and hopeless. Because, I’ll be honest: knowing that Parkinson’s never takes a day off in the constant gnawing away on my motor and non-motor functions is not an easy burden to carry, even on the brightest and sunniest of days. I make sure to remind myself, as often as I can, that every effort I make to keep moving, helps keep neurodegeneration at bay for a little longer. I do my very best to be as stubborn as Parkinson’s is relentless. Time for a walk!
Parkinson’s never takes a day off so neither can I!