Having a chronic disease is lifelong learning, even if you don’t want to. Living with a progressive disease is a challenge on the best of days and if you add the twists and turns that an ordinary life comes with… Well, let’s just say it helps if you are solution-focussed and creative…
Self-tracking is, in my opinion, the most powerful weapon I can wish for in my battle against Parkinson’s disease (PD) and I will explain why.
I see my neurologist once or twice a year, about half-an-hour every time. That is one hour per year, and the rest of the year’s 8 765 hours, I spend in selfcare. This means that I am directly “exposed” to healthcare’s practises and clinical guidelines for my PD during one hour per year. And it is only during this one hour that my neurologist can assess my symptoms, observe my condition and evaluate my status. It is also during this one hour per year that my treatment is being prescribed, different medications and other interventions.
But it is during the rest of the year’s 8 765 hours, that I implement the treatment. Because, let’s be honest, my neurologist doesn’t even know if I take the medications he prescribes. And, probably most important, it is during the 8 765 hours in selfcare that I can observe the effects of the treatment. And this is where self-tracking comes in.
As most of my readers probably know, I have been involved in the Quantified Self (QS) community for a few years. I have spoken at all three Quantified Self Europe conferences and my talk from the first one, in 2011, is mentioned in this article from The Economist.
I hope that the QS community will be able to help me understand my latest “health challenge”. I bought a pulse band last week because I have for a long time wanted to investigate my heart function, mostly out of curiosity. I have worn it on and off for a few days now and have found that my resting heart rate is very high. Sitting here writing this, my HR is in the 90s… I wore the band to a 5 km evening walk yesterday and you can see the result below.
My max HR during the walk was 147 BPM and the average was 118. The lowest HR was 86 and that was during a period of rest around 55 mins in (my back was cramping a bit).
I also wore the pulse band during last night’s sleep, see below. I accidentally paused the session for a few hours but I think it is probably representative enough. The sharp increase to 102 BPM just at the end is when I got out of bed.
My lowest HR during last night was 66 BPM and the average was 77. The peaks at approx 01:50 hrs and 03:20 hrs are probably the result of me waking up and turning over in bed.
For me this raises a number of questions, some of which are:
I would love to hear what you think about this.
I share my birthday with someone very famous, I would say that almost everybody in the world know his name. At least we all know his work or rather, the result of his work. Nicolaus Copernicus was born 498 years ahead of me, to the day, and of course his work fundamentally changed the way we view the world, literally. I think our similarities start and end with both being born on the 19th of February.
Copernicus was born as the fourth child to a Preussian merchant and his wife and he truly was a child of the Renaissance. He had a doctorate in Canon law and was also a physician, astronomer, classics scholar, translator, governor, diplomat and economist (Source: http://en.wikipedia.org/wiki/Nicolaus_Copernicus).
Around the time of 1532, Copernicus’ work had resulted in a manuscript titled De revolutionibus orbium coelestium (On the Revolutions of the Heavenly Spheres), where he challenged the ancient geocentric view of the universe.
The work of Copernicus was further developed by Danish nobleman and astronomer Tycho Brahe (known to have died as a result of refusing to violate etiquette by leaving a banquet to go pee), German scientist Johannes Kepler and Italian scientist Galilei Galileo. The book Philosophiæ Naturalis Principia Mathematica, Latin for “Mathematical Principles of Natural Philosophy“, often referred to as simply the Principia by English mathematician and sir Isaac Newton confirmed the hypothesis of Copernicus a “mere” 155 years after it was postulated.
You are probably wondering what this unwarranted history lesson has to do with healthcare? Well, in my view, healthcare is in dire need of a Copernican Revolution. We need to go from the current healthcare-centric paradigm of healthcare to the natural and, to me, obvious patient-centric paradigm. “But”, I hear you say, “surely healthcare is already and has always been putting the patient in the centre of attention”. Sure, but “the centre of attention” is not the same as being patient-centric. Let me give you an example:
A friend of mine spent some time in the hospital recently. He also has Parkinson’s and since he took ill rather suddenly, he didn’t have his medications with him to the hospital. If you know something about Parkinson’s, you know that our medications are what keeps us going, keeps us moving, and without it, we would not be able to function very well. My friend had notified the nurses at the ward about his problem and told them that he needed to have his medications as soon as possible. They told him that they would get him what he needed when the hospital pharmacy opened at 10 o’clock the next morning. The next morning came and my friend reminded the nurses of his need. He was told that they would get his medications in due time. My friend was becoming increasingly rigid and he tried to tell the nurses that he really needed his medications. At this point, he was probably recognised as “another one of those difficult patients who think they know our job better than we do” and all the while he was getting less and less able to move by the minute. When a nurse finally arrived with the medication he needed, she had to put them in his mouth as he was no longer able to do it himself. He told her to come back in half an hour and she wondered if he would really need more medication that soon. No, he said, I want you to see the effect these drugs have on me. She came back with a colleague 45 minutes later and the patient she had left not even able to raise his hand to his mouth, was now sitting up straight in a chair, cheerfully reading a newspaper. He saw her surprise and said “Can you see what the medications do for me? Do you understand now why I need my pills when I say I need them and not when it suits your schedule?”.
The transition from a healthcare-centric system to a patient-centric one will not be easy, no more than the transition to a heliocentric view of the world was.
But I sincerely hope that we won’t have to wait 155 years for it to be completed!
This is a fantastic campaign on Medstartr by “The Joan of Arc of e-patients” Casey Quinlan! Casey and the rest of the gang at Patients for Clinical Research want to collect a “War chest” where patients who want to go to medical conferences can apply for funding.
The program can be found here:
This is an article written by Jon Palfreman for The Journal of Parkinson’s disease, published on 20th March 2014. It is published here with the permission of the author. The original article can be found at: http://www.journalofparkinsonsdisease.com/JPD/The_Patient_Perspective.html.
In October 1984, a thirteen-year-old girl called Sara sat in a small village hall in northern Sweden enjoying a folk music concert. “Everyone was clapping their hands and stomping their feet,” Sara recalls, “and I wanted to do the same. I could clap my hands, but when I tried stomping my feet, I discovered I couldn’t. It was as if the signals couldn’t go from my brain to my feet.” This is Sara’s earliest memory indicating that something was wrong.
In the years ahead, Sara’s mother, too, noticed her teenage daughter moving differently from her peers. Sara, she observed, struggled when riding a bike, buttoning a sweater, or tying shoelaces and also dragged one of her feet when she walked. The school physician sent Sara to a neurologist, who after initially dismissing her symptoms as psychosomatic settled on a diagnosis of “generalized dystonia,” a lifelong affliction where muscles contract involuntarily.
Sara lived with this diagnostic label for the next 16 years. She studied chemical engineering and went on to work as an environmental consultant specializing in environmental risk analysis. Then in 2000, Sara’s neurologist — on learning that there was a clinical subtype of dystonia that responds to levodopa — suggested she start taking that drug. The impact was astonishing. Within days, her muscles relaxed and she could move much more fluidly. Says Sara, “the levodopa had a tremendous effect. Basically I had a new life, it was amazing.”
Sara felt so well — essentially “cured” of her dystonia — that she and her husband decided to start a family, and in 2003 they had a daughter, Frida. Then something unexpected happened. Sara, now 32, went to see yet another neurologist who, rather than accepting her medical history, examined her anew. His verdict was shocking. He told Sara, “you don’t have dystonia, you have Parkinson’s disease.”
Sara’s life was shattered. “I fell down into a black hole.” After thinking she had been effectively cured, Sara — now caring for a baby just a few months old — had learned she had an incurable neurodegenerative disease. Sara has her own version of the stages of grief that individuals pass through when coming to terms with an incurable illness: her five include shock (at hearing the news); sorrow, (that’s mourning the future you won’t now have); searching (for information); sharing (that’s supporting your patient community), and finally shaping (making your own future again). The first time Sara made this journey from “patient with generalized dystonia” back to “person” it took her, she says, about 16 years. Now she had to go through the transformation again for Parkinson’s disease.
This time it was much quicker. For two reasons. Firstly, she’d done it before. Secondly, the world had changed. “In 2003,” she says, “there was lots of new technology not around in 1987 — there was the Internet, there was Google, there was Facebook. Information was everywhere and it was very easy to get yourself educated and connect yourself with other interested parties.” Sara has rebounded from the shock of her Parkinson’s diagnosis; she’s become a thought leader among parkies in a new age of social media. Sara Riggare not only went back to school, to Stockholm’s Karolinska Institute, to work on her masters and doctorate in health informatics, but also became an entrepreneur.
Riggare passionately believes that patients need to be much more involved in their treatment; that they should take ownership of their disease. The clinical status quo, she argues, is unacceptable, especially for chronic diseases like Parkinson’s. Like most people with Parkinson’s, Sara sees her neurologist every six months for a 30-minute session, and thus spends about one hour in total per year being observed. That leaves, she says, 8,756 hours per year of self care; time when she and others with Parkinson’s experience symptoms, but when nobody’s paying attention.
Sara realized that the same technologies that enabled Google and Facebook offered patients some transformative possibilities for better monitoring their health. She set out to adapt inexpensive consumer products like Fitbit and Jawbone — which use microscopic gyroscopes, accelerometers, and magnetometers to track fitness — so that people with Parkinson’s disease could better understand and control their condition. And she used herself for a pilot study.
Sara has no tremor but suffers from rigidity, bradykinesia, posture, and gait problems. She takes multiple drugs (MAO inhibitors, COMT inhibitors, dopamine agonists, and levodopa/carbidopa) in multiple combinations, multiple times a day. “Everything I do comes down to my medications, so I want to know how to quantify their effect, so I can figure out when to take them.” So she developed one Phone App to remind her to take and to record when she took medications and another App to measure the number of finger taps she could perform in 30 seconds. This simple tapping test gives a rough composite measure of rigidity and bradykinesia. Then she plotted the data. “I found that I actually had a pattern that repeated itself day after day.” She discovered she had a dip — a slow time — around lunch, when her tapping rate went down, and she wondered if by tweaking the medication schedule it could be fixed. “So I moved my dose from 11:30 AM to 11 AM and added a dose of COMT inhibitor, and that small change of half an hour made a huge effect on how my body reacted.”
Working with a business partner, Riggare is developing a smart phone application that other Parkinson’s patients can use to learn more about the specific patterns of their disease. Of course Sara isn’t the first to think of this. There are a number of expensive proprietary systems under development including the European SENSE- PARK project, the Cleveland-based Great Lakes Neurotechnologies, APDM in Portland, Oregon, and Global Kinetics in Melbourne, Australia. These companies are working on various combinations of advanced wearable sensors (worn on sites like the wrist, waist, and ankle), which track multiple domains — bradykinesia, tremor, walking, gait, balance, cognition and more. They are hard at work fashioning algorithms to extract meaningful metrics from the data. Most of these technologies are designed to be used in the clinic, under the control of a neurologist. And the companies’ business models are based on anticipated revenues from traditional Parkinson’s care and FDA regulated clinical trials.
Sara sees her goal as different. “My mission is to give individual patients the tools to improve their own healthcare experience. I need to show that my research can change things for me and for the world, and that it can make an immediate benefit, not in 10 or 20 years.” Interestingly, such ideas of a more personalized, patient-driven healthcare system find support outside of mainstream medicine. A number of powerful constituencies get very excited by the concept of wearable sensors: from Silicon Valley entrepreneurs making smart devices for the health and fitness market to proponents of the “quantified self” movement (a community where individuals seek “self knowledge through self tracking”), to scientists interested in amassing and analyzing “big data”.
Inside the biomedical research community, by contrast, such ideas get a cooler reaction. In the traditional medical model trained researchers do research, qualified clinicians practice medicine, and patients participate in clinical trials — they don’t study and manage their own healthcare.
But clinicians and researchers might be wise to take notice. History shows that “disruptive” change tends to come from the outside. Just as the music industry didn’t invent Spotify, and the phone company didn’t invent Skype, so it’s unlikely that clinicians and biomedical researchers will be the ones to tear down their existing biomedical infrastructure and replace it with something different. Of course, those disruptive outsiders, whoever they are, can expect to face resistance. As the personalized genetics company 23 & me discovered, there are lines that entrepreneurs cannot yet cross without attracting FDA censure.
Sara realizes that she’s not allowed to practice medicine. “For now we speak of it as being a support for your physician.” On the other hand, she insists that the eventual goal is to give patients the power to “take their health in their own hands…the patient will always be the owner of their health data, it is up to them to share it or not share it as they wish.”
Det här med patientmedverkan är inte lätt, det vet jag. Jag har skrivit flera bloggar tidigare på det temat, t ex här, här och här. Jag är väl medveten om att det inte är lätt, det är ju därför ingen har lyckats ännu. Det var därför glädjande att se att Nya Karolinska Sjukhuset (NKS) ordnar en tvådagars konferens på temat “Att tänka och bygga nytt för framtidens patient”.
Nya Karolinska Sjukhuset är enligt http://nkskonferensen.se/om-nks-projektet/ “en av de största satsningarna någonsin på vården i Stockholms län”. Jag har i en tidigare blogg påpekat att hela detta jätteprojekt (12 våningsplan, sammanlagt 330 000 kvm som tar 7 år att bygga) där man säger sig ha ledordet “patienten alltid först” inte har några patienter engagerade någonstans i projektet.
Nu ordnar man konferens den 24-25 april i KIs nya fina aula för att informera bland annat de som arbetar med utveckling av vård, utbildning och forskning. På http://nkskonferensen.se/om-konferensen/ kan man bland annat läsa:
“Konferensprogrammet genomsyras av patienten i centrum vid planering och genomförande av såväl byggnation som vård. Likaså av hållbarhet – Nya Karolinska Solna ska bli ett av världens mest hållbara sjukhus. Konferensen kommer också att ge många exempel på innovation och nytänkande. Dessutom lyfter konferensen fram möjligheter och utmaningar med samarbete kring stora projekt så som Nya Karolinska Solna.”
Det låter ju fantastiskt bra och verkligen angeläget. Jag tittade igenom programmet för konferensen och talarlistan. Men… Hur i hela friden tänkte dom????? Inte en enda patient på talarlistan…..
Hur kan man prata om “patienten i centrum” utan patienter???
Nu på lördag, den 1/2 2014, anordnas ett seminarium i Stockholm om hur vården kan förbättras och vad som hänt sedan Maciej Zarembas artikelserie “Patientens pris” i DN och jag tycker att det är ett utmärkt initiativ. Se program här: http://www.ifl.se/ledande-fragor/. Seminariets program är proppfullt av läkare, forskare, politiker och andra. Men….
In september 2013 I wrote a blog in Swedish fuelled by my frustration over the current situation regarding patient participation. I gave it the title “Enough is enough” (although in Swedish obviously). The blog seemed to resonate with a lot of people so I followed up with a blog with my suggestion as to a few questions for stimulating discussions. Here they are in English:
Why does the organisation/project/company want to engage patients? What do they want to accomplish by engaging patients? What kind of value do they see that the patients can add? What are their expectations on the patients’ participation?
How are patients being engaged? Are the patients given what they need to contribute in a reasonable way to what they have been engaged to do? What does the process look like to ensure that the patients are given the influence and mandate they need to be able to do a good job? How is the patients’ participation facilitated by compensating them for the time and money they spend to be able to participate?
When in the process are patients being included? Are they asked their opinion only when the result is to be approved and are expected to simply agree (because if they don’t, they are considered difficult to work with and will not be invited next time)? Or are they invited to constructively contribute to an honest evaluation? Are they maybe even given the opportunity to actively participate in the implementation of the project prior to evaluation? Is anyone bold enough to invite patients to participate already in the design phase? Unfortunately, I don’t think there are a lot of examples yet where patients have been given a genuine invitation to contribute as early as the planning phase and all the way through the steps to evaluation. If you know of any, please comment below.
In the discussion following the Swedish blog post, a few additional questions were suggested:
Where in the organisation are patients engaged? On all levels? Why/why not?
Are YOU prepared to change when you engage patients? #patientengagement = #profengagement
I want to emphasise that in my view, there are no right or wrong answers to these questions. If the organisation/project/company don’t see any true value in engaging patients, they shouldn’t. But I think that these questions could serve as a way of initiating an honest discussion on patient participation.
Please comment and add your view!
I have never made any New Year’s resolutions and I have only recently started setting goals for myself.
I remember a discussion I had with my younger brother on a summer’s night probably around 20 years ago. We were in the attic of our grandparents’ summer cottage in the Swedish country side having a chat about “life, the universe and everything” before going to sleep on our beds among the spare furniture that were stored up there. Both in our mid-twenties, we were faced with the scary wonders of adulthood, including decisions like: “What sort of job do I want?”, “Where do I want to live?”, “Do I want to start a family?” etc. I think that both my brother and I had found our first jobs after university at that time and I remember my brother telling me about his goals in life, how he was planning to be married and have children within, I think he said 10 years time. When I told him that I had not made any such goals for myself, he was very surprised. I was also surprised, but for a completely different reason. My surprise came from realising that other people had different possibilities in the way they saw their lives. It had never occurred to me to set goals for myself, due to the fact that I already at that early age knew that my body wouldn’t always do what I asked of it. I simply didn’t see any point in setting goals when I wouldn’t know what I would be able to do even a month later, let alone a year.
I didn’t plan my life, life more or less happened to me. At times I would really struggle with walking, I would move really slow and fine movements, like buttoning buttons or tying my shoelaces, were a challenge. Somewhere around this time, the implications of the diagnosis of generalised dystonia that I was given in my late teens, started to hit me. I had just started taking medication, which gave me some relief from the tension in my muscles and gave me a slightly more even gait. However, I was in no way in a position to feel confident enough to make plans for the future…
In the year 2000, this all changed. My neurologist had read about a type of generalised dystonia that responded well to levodopa, a medication mainly used for Parkinson’s disease, and he suggested I try it. He gave me a schedule for slowly increasing the dose until I could notice an effect, and boy, was there an effect!!! I won’t bore you with the details, but in short, my life was fundamentally changed! For the first time since I could remember, I could actually move without feeling like I was walking in water up to my neck, my fingers were suddenly very agile and I was the happiest person alive!
The mobility the new medication gave me, led to new ideas and wishes in life, wishes I hadn’t known I had and in January 2003, we had a daughter, a beautiful baby girl. Born nearly three weeks early, she was very small but with a strong will and she is still, almost 11 years later, equally impatient and strong-willed. Our lives changed forever and we loved it!
Later that same year, I was told by another neurologist that I didn’t have generalised dystonia, I had Parkinson’s disease… Parkinson’s disease… It felt like I fell down into a black hole and I have my darling daughter and her father to thank for making me realise that I had so much more to gain from digging my way back up again than staying down there.
As you can imagine, being diagnosed with a neurodegenerative disease that is very much associated with older people at the age of 32 didn’t really promote goal setting activities… so it took me a few years until I felt confident enough, but here is the result of my first attempt at written goal setting:
In translation it reads:
“Goal setting for the first time, 12 July 2010
Goal for the summer (before 19 August):
Learn to walk my tightrope properly
Get my priorities right
Never have to have a DBS
Be able to make a living out of my interest for Parkinson’s disease”
I actually think I have reached a few of them in some way, we’ll see what next year brings. Maybe this is the time for my first New Year’s resolutions?
This is an article I wrote for “On The Move”, the magazine of Parkinson’s Movement on my experiences when travelling to the World Parkinson Congress in Montreal earlier this year. In the magazine, the article had to be slightly edited to fit the space available, but this is the “uncut” version .
1. How many sets of medication should I bring?
2. Will I have to change my medication timings due to traveling over multiple time zones?
When preparing for traveling to the World Parkinson Congress in Montreal, there was an additional consideration for me to take into account:
3. Do I pack an adorable cuddly raccoon in a red hoodie in my check-in luggage or in my carry-on?
Traveling to Montreal took me on an unusual route: From Stockholm to London for a few days, then on to San Francisco for a few days and from there to Montreal and WPC 2013. I was going to be “on the road” for 16 days, going over multiple time zones several times and attending 3 conferences.
So that gives the answer to question number 2; yes, I would have to change my medication regimen, several times.
After a lot of thinking, I decided on four complete sets of medication, to be on the safe side, and to pack one set in my suitcase, one set each in my two carry-ons and to give one set to my colleague. Question number 1 sorted.
The racoon is of course the loveable mascot of the WPC, Parky, created by initiative of one of my fellow WPC 2013 ambassadors, Canadian Bob Kuhn, to give the people coming to the congress a chance to support the WPC and at the same time have something to bring back to children and grandchildren. Parky proved to be an excellent travel companion. Not only did he help me pack my medications, he was also an excellent ice breaker and conversation starter, but more on that later. And of course, I couldn’t check him in! Question number 3: check!
As you all probably know by now, I am an engineer by training and a few years ago, I decided to combine my engineering skills with my patient experiences and try to improve things for myself and others with chronic diseases. Pretty much exactly three years ago, in September 2010, I started studying at a master’s program in Health Informatics at Karolinska Institutet, a program combining technology with all aspects of healthcare. It was just what I was looking for! Just a month into the program, I went to Glasgow for the 2nd World Parkinson Congress, and came back with an even greater conviction that I could really make myself useful and contribute to the Parkinson community.
In March 2012, I was registered as a PhD student at the department for Learning, Informatics, Management and Ethics at the Karolinska, and my research is focussed around how we can use observations we make about our individual disease to learn and even improve our own health. In my opinion, we can influence the effect our treatments (pharmacological and other treatments) have on us, both for better and for worse. I am not entirely sure of the situation in other parts of the world, but in Sweden, we have a lack of neurologists, and we don’t have that many Parkinson nurses either. This means that I see my neurologist once or twice a year, about 30 minutes every time. In other words, I spend in total one hour in neurological healthcare every year. The rest of the year’s 8 765 hours, I spend in selfcare. During all those hours, I can observe my condition and learn about my individual variations and patterns and this gets easier and less burdensome if I have useful tools, for example different apps and other devices. So, I figure that the information that I can collect during all those hours of selfcare every year, can be of use when I see my neurologist, as a way of giving both him and myself an idea of how I’ve been doing since last time and in my research I am exploring collecting and presenting information that is both relevant and useful, using apps and devices like sensors and other things.
The methodology I am working on in my research, came in very handy when going on this multi-legged trip. I hadn’t travelled much across multiple time zones since starting medicating for Parkinson, so I was concerned about how to adjust my medication timings in the best way so that I would be able to get the most out of all the conferences as well as hopefully also have some energy left. I decided to try to make sure that I could start the next day on every new location with my morning dose on the ordinary time in local time. When travelling west, this meant adding a dose or two during the day of travelling and for travelling east, I took out one or two doses compared to my ordinary daily dose. I tried to keep to the usual intervals between doses to be able to function during the flights as well. The results were very good! I took notes during the travelling on when I took my meds and how I was feeling and I was very happy and a bit surprised that I was able to give my presentations at the conferences as planned and also have energy for some sightseeing.
Travelling with Parky was, as I said earlier, an enjoyable experience; we had a milkshake together in downtown San Francisco in preparation for a presentation at a Quantified Self meetup (if you haven’t heard of the Quantified Self, google it, I think you’ll find it interesting) and saw the Golden Gate bridge together. He also kept me company in all the airports and made sure my ticket was safe. In Montreal, he helped me meet new friends and basically was the center of attention. But in London, he was a bit out of line… I left him in the apartment we had rented when we were at the Medicine 2.0 conference and when we came back, he had drunk our beer and even eaten our chocolate!
Safely back in Stockholm, we both are looking forward to going to Portland, Oregon in 2016 and meanwhile, Parky has also made some new friends.