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.
I have a new friend. She can be seen on the photo here and I picked her up in a shop the other day. A few days earlier I had no idea that I would feel the need to pick her up, but there you go, that’s life I guess.
On Monday I went to work as usual, went to a few meetings in the morning, more or less ‘business as usual’. For lunch, I thought I’d show my two colleagues the brand new auditorium and the lunch restaurant there, so we took a short walk and went into the building that looks like a giant glass bowl. Of course, if you give three engineers the choice of three different dishes for lunch, they will pick one each. We went looking for a table, sat down with salmon on a bed of fennel, a giant ball of mince of lamb with mash and a Swedish quiche on a bed of greens, and no, the woman in the party (me) did not have the quiche…
Having finished both the food and the mandatory Swedish ‘fika’ (coffee or tea plus something sweet, like a cookie or cake or similar), we took our trays and made our way through the spacious restaurant towards the place for dirty dishes and I found myself thinking: “hmmmm, if I were to see someone I recognise sitting at those tables, I would probably find myself freezing…”. For those of you readers lucky enough to not understand the meaning of that sentence, here is a brief video from youtube (for the extra interested, look here). There is a lot to be said about this mysterious speciality of a fascinating disease, but that’s for another day, back to the restaurant…
You will probably find this just as hard to believe as my brain did, but exactly as that thought (“hmmmm, if I were to see someone I recognise sitting at those tables, I would probably find myself freezing…”) had flickered through my brain, I actually did see someone I recognised, and even before I had consciously noted that the pattern recognition system of my defective brain had identified a match with the increasing numbers of posts in the “database”, my knees had stopped working… As an immediate result, my feet were completely stuck to the brand new floor. Unfortunately, the rest of my body hadn’t been made aware of this sudden change of priorities, and therefore continued in the previously agreed direction. Before I knew it, my knees were hitting the aforementioned floor (ouch!) and my adrenaline levels skyrocketed. The most unexpected thing is, would you believe it, that I didn’t drop my tray!!!! The other guests in the restaurant applauded as I got back up on my feet, with the tray still intact. I made a sort of curtsey and handed over the tray to the man who completely unknowingly put me in this awkward position by being someone I knew; one of my PhD supervisors as well as a neurologist. He completely understood why I was looking like I was glued to the floor, as did the person he was having lunch with; a professor in neuroscience, and the former came to help me. I have no idea how, but I made my way towards my surprised colleagues and we left the restaurant full of people with an interesting story to share at the dinner table. My knees were tender from the impact, but more than that, my ego was badly bruised…
When the shock had settled slightly, I decided that I would do my best not to let this limit my life any more than absolutely necessary so after some Facebook facilitated advising with a few people around the world, I decided that I needed a new friend. The decision did not come easily and using it still takes a lot of “pride swallowing”…
Would you help me choosing a name for her?
To be continued…
De senaste dagarnas gensvar på mina inlägg “Nu får det vara nog!!!” och “Förslag på kontrollfrågor för RIKTIG patientmedverkan” har på samma gång gjort mig väldigt glad och väldigt bekymrad.
Glad för att det såklart är roligt att höra att även andra tycker att en fråga man brinner för också är viktig för andra.
Bekymrad för att jag ännu tydligare inser att detta är en fråga där vi borde kommit längre…
Min dröm/målsättning är att en konferens om och med RIKTIG patientmedverkan kan arrangeras inom ett år från nu. Jag inser att detta kommer bli svårt, kanske omöjligt, men jag vill ändå försöka.
Det finns inte så väldigt mycket ramar ännu, jag startade en improviserad crowdfundingkampanj på Twitter och Facebook igår och fick ett överväldigande gensvar! Jag startade med att lägga 1 000 kr ur egen ficka och några andra gick med och gjorde samma sak. Så nu är det nog dags att ta detta på allvar! Såklart så är det ju bättre ju mer pengar vi kan få in, men jag uppskattar att med 500 000 kr kommer vi rätt långt. Pengarna behövs främst för att avlöna en projektledare som kan lägga ner tid på detta, så att det kan bli en RIKTIGT bra konferens. Det går ju också att komma långt med frivilligarbete och där har jag redan fått erbjudanden från personer som vill hjälpa till på olika sätt:
Om du vill ha löpande information om planerna på en
Konferens om och med RIKTIG patientmedverkan
“Av patienter, med patienter, för alla som nån gång kommer vara patient och för vårdgivare som vill bli RIKTIGT bra!”
fyll i nedan. Om du vill och har möjlighet, så kan du också välja att stödja planerna på en konferens ekonomiskt. Inga pengar betalas nu. Fyll även i om du vill bidra på något annat sätt.
Dela gärna detta inlägg!
Jag blev faktiskt lite överraskad av gensvaret på mitt inlägg igår. Visst har jag hört personer, som liksom jag har tröttnat på alla vackra ord om hur viktiga patienterna är, för att sedan återigen bli “tagen som gisslan” i någon kommittée eller projekt som kommit på att dom behöver kunna kryssa i rutan för “patientmedverkan”, men jag blev glatt överraskad av hejaropen och medhållet som kom från alla möjliga yrken och specialiteter inom det breda område som jag hellre kallar “hälsa” än “hälso- och sjukvård”.
Blogginlägget igår föregicks av en rätt intensiv diskussion på twitter kring ett av exemplen jag nämner i min lista och i samband med det så föreslog jag några kontrollfrågor för RIKTIG patientmedverkan. Jag tänkte upprepa de frågorna här och vill gärna ha kommentarer, synpunkter och diskussion. Kom igen nu!
Varför vill organisationen/projektet/företaget engagera patienter? Vad vill man uppnå med att engagera patienter? Vad ser man att patienterna kan tillföra? Vilka förväntningar har man på patienternas medverkan?
Hur går det till när man engagerar patienter? Vilka möjligheter ger man patienterna att bidra till det de engagerats för? Hur säkerställer man att patienterna får det inflytande och de befogenheter de behöver för att kunna göra ett bra jobb? Hur möjliggör man patienternas medverkan genom att ersätta dem för utgifter, kostnader och nedlagd tid?
När i processen engageras patienter? Tas de med först när resultatet ska godkännas och de bara förväntas hålla med (annars ses de som besvärliga och tillfrågas inte igen…)? Eller tas de med på ett konstruktivt sätt för att bidra till en ärlig utvärdering? Ges de kanske till och med möjlighet att delta aktivt i genomförandet innan det ska utvärderas? Tar någon kanske ett sådant djärvt grepp att patienter får vara med och designa? För inte finns det väl många exempel på där patienter getts genuin möjlighet att bidra redan från planeringen och vidare genom de tidigare nämnda stegen?
Dessa var de kontrollfrågor jag nämnde på twitter och jag tar på intet sätt åt mig äran av att ha kommit på dem själv, medskyldiga är: @Durgastoolbox @Doctor4Quality @hannek12 @Gripenfighter @ElenaNoMad och många fler.
I diskussionen som följde på twitter kom följande tillägg (omnumrerade för ordningsföljdens skull):
Var i organisationen är patienter med? På alla nivåer? Varför/varför inte?
Är NI beredda att förändras när ni engagerar patienter? #patientengagement = #profengagement
Nu får det vara nog!!!!
Hela vård-Sverige pratar tills dom blir blåa i ansiktet om patientmedverkan och hur patienterna ska engageras och kunna vara mer aktiva, och visst, tanken är ju god…
Men herregud, hur svårt kan det vara????
Det heter ju patientmedverkan av en anledning!!!! Att vi patienter ska kunna medverka i arbetet att förbättra vår egen hälsa…
Detta kan jag prata i dagar om, men jag ska ge tre högst aktuella exempel på hur det kan bli så fel ibland. Och jag menar inte på något sätt att dessa exempel är de tre värsta eller allvarligaste. De råkade bara just idag vara de tre mest aktuella i mitt medvetande.
Jag har fått nog och jag vet att jag inte är ensam. Det är dags att göra nåt!
Jag drömmer om att se en
Jag är samtidigt extremt medveten om att jag egentligen inte har tiden att dra detta jättelass… Vem vill vara med och hjälpa till? Kommentera på detta inlägg.
p.s. Om jag har felaktig information angående något av exemplen, blir jag bara tacksam om du påpekar det, i detta fall blir jag glad om jag har fel och det finns (tyvärr) gott om dåliga exempel att ta av ändå…
The question of value is an intriguing one. What do we value? Are people judged based on their abilities: the man who were strongest were made (or made himself) the leader of the tribe? Or is a man’s value to a larger extent based on his possessions: the man with the largest number of belongings when he died was the winner? In the old days, when someone owned something that someone else wanted, they found ways to exchange items by trading an item with a certain value for one or more items representing a value that both parties could agree were equivalent to the item in question. One day, some clever man (or woman?) came up with the idea of money as a sort of “exchange rate” for “value” and that probably both simplified and complicated things. These days, in the modern society, we all know what things are worth, don’t we? We all know what we are prepared to pay for an item or a service, don’t we? We all know the value of things we find important, don’t we? ………. Or, do we? Do we really?
Thomas Carlyle once said: “He who has health, has hope; and he who has hope, has everything.” We all value health, and historically, health has been seen as created in healthcare. In healthcare, value and money has always been an issue. There are a gazillion different reimbursement systems in healthcare in operation around the globe, one less appreciated than the next, and the person who solves that Gordian knot will probably receive the Nobel prize in both medicine and economics (and possibly also the peace prize…).
Patients do not want healthcare, we want health!
However, healthcare can not operate on health, healthcare is driven by money, and the leading “currency” in healthcare is DRG codes, ICD-10 etc. So the question is:
What is the currency in health?
That is of course a very difficult question and I am by no standards an health economist, so please forgive my (probably far too obvious) ignorance. I will nevertheless go out on a limb and say that I think we have a new currency in this field.
I think that the currency in health is data.
We all talk about “data-driven-this” and “big-data-that” so it is apparent that there is great value in data. But who controls that value? Of course the person or organization who controls the data, also controls the value of it. And in healthcare, patients very rarely control their data. Maybe we need a new paradigm? Maybe healthcare needs to let go of the control of the data we as patients generate?
Maybe patients controlling their own data is one of the fundaments to authentic patient engagement?
One of my favorite films of all times is called “The Princess Bride”, a sort of “Errol-Flynn-goes-Monty-Python” experience and if you haven’t seen it, I strongly recommend you doing so. One of the film’s villains frequently says “Inconceivable!” and finally his twice-as-large and half-as-smart sidekick interjects: “You use that expression a lot. I don’t think it means what you think it means.”.
In my opinion, the same is true for the expression “patient engagement”, I don’t think it means what you think it means… Let me try to explain.
All over the world, healthcare organisations are desperately trying to engage patients to tell them what it is like to be a patient, to tell them how they (patients) want them (healthcare organisations) to work to best provide the services they (patients) need and want. Don’t get me wrong, this is a good thing! Patients’ experiences are of course extremely valuable to improve the healthcare systems. However, I see a few problems here:
These minor objections however fade in comparison to my main concern with how currently patient engagement is being operationalised. Think about it, all over the world, healthcare organisations are inviting patients to engage in the healthcare structure…. think again…. healthcare organisations are inviting patients to engage in the healthcare structure. We, the patients, are guests at healthcare’s table and, as guests, we are expected to adhere to the prevailing rules (explicit and implicit). Are we really an equal stakeholder? An equal stakeholder with mandates and responsibilities?
Is there really no other way of engaging patients????
Being an engaged and knowledgeable patient has a lot of benefits. On a personal level, knowing as much as I possibly can about my condition, about symptoms, medications, side effects, treatments, research and more, gives me more control of the situation, increases my possibilities to keep the progression of the disease at bay or at least keep up with it.
On another level, it can give me the chance to make this world just a little bit better. A few years ago I decided to make an effort to combine my experiences of being a patient with a chronic condition and my engineering knowledge in a more concrete and explicit way. To make a long story short, one thing lead to another and I am now in a position where I can hope to be able to influence the way patients are regarded in healthcare as well as in the rest of the world, albeit in a small way.
My new career in the healthcare area has taught me a lot of things. It has taught me that there is a very large number of fantastic people trying to make healthcare more participatory, letting the patients take more responsibility in their own selfcare. It has taught me that there are a lot of organisations working hard to establish a true partnership between healthcare and the patients. One example of such an organization is the Institute of Medicine, and the meeting they arranged last week titled Partnering with Patients to Drive Shared Decisions, Better Value, and Care Improvement was a joy to follow on webcast.
But there is so much left to do. We can talk about strategy for change until we turn blue in the face, but to quote Cristin Lind (@durgastoolbox) from the very same meeting: “Culture eats strategy for lunch”.
So many organizations engage patients based more on tokenism than on a wish to take advantage of the true talent of patients.
Maybe it’s time for a new kind of tokenism? A token that you get from taking the patients’ journey?
Jag hade glädjen och äran att medverka vid SKLs 7e Patientsäkerhetskonferens på Stockholmsmässan i tisdags. Det var väldigt trevligt att få stå på den runda scenen under moderator Katarina Hultlings skickliga ledning och ett privilegium att få tala efter professor Diana Delnoij från Tillburg University och sektionsledare Britt-Mari Banck och patient Thommy Edberg från dialyspaviljongen Länssjukhuset Ryhov. Diana Delnoij presenterade på ett kunnigt och engagerat sätt en översikt över dagens forskningsläge gällande nyttan med patientmedverkan. Britt-Mari Banck och Thommy Edberg beskrev den mycket påtagliga nyttan för såväl vården som enskilda patienter med den världsunika självdialys som bedrivs i Jönköping. Det var underbart att höra!
Bilderna från min presentation finns nedan.
These are my feet, they have been with me for 42 years soon and they mostly serve me well. However, recently I have noticed an increasing tendency to get freezing-of-gait, an annoying effect of my “flavor” of Parkinson’s disease. For some more information on what freezing-of-gait, watch this film: http://www.youtube.com/watch?v=aaY3gz5tJSk. Although the case in the film is quite severe and I am not even close to having the problems the man in the film has.
I am a firm believer in the ideas of Quantified Self and incidentally currently have the fortune of participating in a study from Psykologifabriken aimed at encouraging everyday creativity. These two things lead to an idea during my walk to work this morning: I will try to quantify my freezing-of-gait and monitor the effects of different interventions on it.
Starting today, the plan is to register when my freezing-of-gait appears, using a scale 1-5 for severity. Let’s see what happens!